“I’ve never had the chance to meet another poz woman, for my dad forbid me from having my relationship to HIV after my mother’s death. So I’ve spent the last 9 years feeling alone and confused, hurt that I couldn’t speak to anyone about the things that were going on in my body. I had no sense of guidance and didn’t know who to trust. I’m past all that now and am ready to have the love and support I deserve!” Participant from New York City, United States
“I feel that is important to connect with others who have HIV because it helps to know that we are not alone in our struggles. I’ve found that the more open I became, the freer I felt. I am no longer living a double life in which I felt deceitful and not true to myself.” Participant from Vancouver, Canada
Mapping Informal Networks of Women Living with HIV JESSICA LYNN WHITBREAD
A note about the letters and transcriptions: women involved in the project were asked to only write letters that they felt comfortable sharing with the understanding that last names and contact information would be removed when published and/or exhibited. In some cases, additional information has been removed in an effort to maintain each womanâ€™s confidentiality. Please treat these letters with the respect they deserve, as the women are all incredibly courageous for sharing their stories and wisdom through this project. The letters have been transcribed, in some cases, with minor edits while still maintaining their integrity.
ISBN: 978-0-9921348-0-8 Published by Jessica Lynn Whitbread www.jessicawhitbread.com Design and layout by Pulp & Pixel Creative www.pulpandpixel.ca ÂŠ 2012 - 2014 All work remains the property of the authors. All rights reserved. No part of this book may be reproduced in whole or in part in any form without the permission of the authors. Printed and assembled in Canada Limited first edition of 100 copies. Book Funding made possible by:
This book is dedicated to the many women living with HIV who have spent their lives carving spaces for themselves and others in their communities. It is also dedicated to my friends and family who have surrounded me in a bubble of love, protecting me every step of the way.
CONTENTS Foreword by Darien Taylor
Introduction 1 What is Tea Time?
How to Host a Tea Party
Tips on Facilitating Tea Time
My Teacups and Letters
The Tea Parties: Toronto, ON - February 10, 2012 29 Orillia, ON - February 21, 2012 35 Montreal, QC - February 25, 2012 39 Richmond Hill, ON - March 5, 2012 47 Hamilton, ON - March 11, 2012 57 Washington, DC - March 13, 2012 71 Toronto, ON - April 5, 2012 89 Ottawa, ON - April 20, 2012 103 Victoria, BC - May 30, 2012 111 Vancouver, BC - September 24, 2012 123 Montreal, QC - October 24, 2012 135 New York City, NY - March 10, 2013 145 Amsterdam, The Netherlands - September 1, 2013 151 Nairobi, Kenya - October 27, 2013 159
FOREWORD BY DARIEN TAYLOR
s a younger woman with HIV who took part in the first wave of AIDS activism, documentation and community-making, I feel privileged to have been involved in Jessica’s renewed efforts on behalf of our small but special tribe. Jessica and I sometimes joke that we are related like mother and daughter by our similar responses to being HIV positive, separated by some twenty years. We have both learned immensely from gay men, our brothers in the fight against AIDS, but feel a longing for and a responsibility to create a comfortable, accessible community of women living with HIV. We are both convinced that comfort and community reside in talks at kitchen tables, with hot beverages, baking and crafts—not to mention a healthy sense of irony about how traditional this can look and sound. But these simple things do connect women all around the planet, and give us the confidence to say the difficult things to each other about living with a disease that affects not just our bodies and our health, but our minds, our social connectedness, our identities as lovers, as mothers, as people entitled to happiness, rights and protection. Thus… the Tea Time project. It’s wonderful to witness the next generation, my HIV positive daughters, taking on the tough work of communitymaking and doing it their way. I love to see the echoes of earlier women and HIV work around in their labours. And it’s an honour to be able to participate, merely participate, in the work that younger women like Jessica are so capably leading.
s a woman living with HIV who identifies as a queer, often femme, artist and community organizer I have often felt disconnected from the giant body we lump together called a “community” of women living with HIV. From the outside, it would appear that a woman’s experience with HIV is the same or at least fairly similar. This simple understanding does not account for an individual’s intersecting identities. Power, privilege, access to services, support and geographic location create great disparities in each woman’s experiences with HIV. In many circumstances I have felt disconnected from other women when all we have in common is an HIV status, which has often left me feeling out of place and lonely within a movement that I have based my life around working with and for. In the same breath, the disconnection with those who do not identify as living with HIV is vast. The way I experience the world is greatly shaped by my HIV status. Travel bans, criminalization of sexual exploits, reliance on the health care system and daily doses of medication are just some of the realities that remind me that I am different than many others. These realities are often not understood by people who are not living with HIV. Over the years I have found that I relate more to gay men and transgender people than most others. This has caused heartache, as I am only at best an honorary member of their communities. I often feel like “the little sister” who is never really part of the group. I yearn to meaningfully connect with women living with HIV on a regular and constant basis. I want a peer to help me better make sense of my own experience and for this sense to be shared. As I grappled with this issue for most of my adult life, Tea Time: Mapping Informal Networks of Women Living with HIV (Tea Time) became a personal journey to discover my own understanding of HIV in relation to gender. Each woman’s story is rooted in her own individual experience. This is mine. Similar to the many conversations that were had during Tea Time, these pages offer glimpses of the complicated thought process of living
with HIV. You will read about some of these thoughts in the letters that were shared by the women who attended. As the facilitator of each tea party, I have to admit that I often felt as though I was somewhat of an outsider. Despite writing and engaging in a process of personal reflection with the first ten letters, taking time to purposely pair them with their teacup, I always wished that I had the opportunity to participate in the same way that the other women had. I envied the other women for getting their own special teacup and letter. That being said, I have been given some teacups from women outside the project, and these special cups I keep on a shelf in my living room. I cherish them and the moments in time they encapsulate. It is in these moments that I am reminded that I am the same, just a woman living with HIV with my own story to tell. When I started Tea Time, I wanted to find a way to build the fragmented and disconnected network of women living with HIV in Canada. To show the interconnectedness through the informal social networks—person A hosts the tea party and invites person B who then invites and introduces person C and D—and find a way of creating a sustainable method of making physical linkages between women living with HIV. These linkages can happen in multiple ways: 1. face to face interactions at the tea parties themselves; 2. through the physical teacup and letter exchange; 3. post Tea Time correspondence. Here is a little picture of how Tea Time worked in this project: women living with HIV and other community stakeholders were informed that I was exploring research led for and by women living with HIV using a participatory arts-based research method called Tea Time. The creation of this method was the body of my master’s work at York University in the Environmental Studies Program. My final project was the application of the method in Tea Time as Participatory Research: Mapping Informal Networks of Women Living with HIV with the bulk of it happening in the spring/summer of 2012. While the research was time bound
by academic deadlines and funding restrictions, Tea Time as a project has endless possibilities. The demand from women living with HIV to be part of Tea Time has been encouraging. As an artist and activist, I happily take this project on as part of my social arts practice and community organizing commitments to social change. The idea for Tea Time began many years back as a dream to drive across North America having tea parties in which to connect and document the experiences of women living with HIV. The experiences of women living with HIV are often sidelined, and only captured though the lenses of others who often misrepresent our individual and collective stories. Misrepresentation and sensationalism are issues within our society, and often cause more harm than good. These can impact the ways that our friends, families, co-workers, lovers, and other people in general, treat and regard relationships with women living with HIV. Another common impact that is often forgotten about is our own regard for self. Internalized stigma can be even more detrimental to a woman living with HIV’s health. Unfortunately, it is a reality for many of us. A cab driver once asked me if there was a cure for AIDS. My reply was, “yes—kindness”. If we learn to make space, to listen in a way where others feel heard and represented, if we are able to accept others as whole selves and not fragments of, to be honest about oppression and harmful barriers for people accessing the treatment they need and want, then the experience of living with “AIDS” would be cured. These changes will take a lot of work. But without them, stigma will roam free. People will continue to hide, and the stories of our lives will continue to be narrated by others—no matter how inaccurate. HIV breeds in hate. It feeds off systemic injustices and stigma. If there was no stigma, then the rates of HIV would, in my opinion, decrease. People would be able to live their lives to their fullest, loving who they wished to love, having access to comprehensive health care of their choosing, and be able to be meaningfully employed amongst a plethora of other things.
Through Tea Time, women are given the space to tell their own truths, express what they want, build on and share collective knowledge. But most importantly become conscious of their collective struggles and, in turn, begin a process of supporting themselves and others to take ownership of their stories. Throughout this process I have often thought that I should have changed the subtitle from ‘Mapping Informal Networks’ to ‘Navigating Informal Networks’, because I realized, on a personal level, that is exactly what I was doing—using this project to not only link other people to a community of women living with HIV, but myself as well. As of this writing, over sixty-four women living with HIV have participated in the project in fourteen unique tea parties in twelve different cities—starting in Canada, and now expanding across the world. Through Tea Time I have seen a number of exciting interactions—friendships form, women meet another woman living with HIV for the first time; people expand their understanding of self and others, isolated women become part of a community, people rely on each other, women share their personal strategies for overcoming adversity, intergenerational relationships and mentoring, and women becoming empowered to start their own Tea Time groups. What I have heard is equally as incredible. Oh, for others to be a fly on the wall, when no social workers, doctors, lovers, or children are in the room to judge us or not understand. Tea Time is an opportunity for outsiders to access our world through our letters to each other. Through this project we all get a tiny glimpse into the lives of each of these women. By reading our words and listening to our stories we all help bring our often silenced voices to light. I hope that by reading these letters and looking at these beautiful teacups you’ll feel as honored as I do every time I think about how incredible each and every one of these women are.
WHAT IS TEA TIME?
ea Time as Participatory Research: Mapping Informal Networks of Women Living with HIV was a community-based research project that brought women living with HIV together using the Tea Time method (Whitbread, 2012)1. The project was designed to highlight the health needs of women living with HIV in a North American context, as well as to explore the application of the Tea Time method as a community-building tool. The initial research included thirty-seven participants who attended one of eight tea parties in seven cities. After the original research phase was complete, Tea Time has shifted to be a community arts project. Following the first eight tea parties, a number of requests from women living with HIV were made to host the tea parties in their cities. Women expressed that Tea Time was an innovative way to structure peer-led social support groups for women living with HIV in their area and wanted to be connected to larger networks beyond their own. One of the many successes of Tea Time has been the continuation of a number of the Tea Time groups. In Hamilton, Ontario, the original Tea Time group has continued to meet once a month and the success of this group has led to the expansion of two more ongoing women’s groups in the Southern Ontario region. In addition to this, there are the Tea Time ladies in Victoria, BC who are in regular contact and do joint advocacy together. One young participant received a $10,000 MAC AIDS Fund grant to start her own monthly tea party group for women living with HIV in Newmarket, Ontario. Finally, one of my favourite Tea Time outcomes happened at the Canadian Association of HIV/AIDS Researchers (CAHR) conference in April of 2013, when a group of Tea Time women were mobilized to do a non-violent direct action, protesting AIDS profiteers and the criminalization of HIV non-disclosure. After their action a friend of mine said, “I looked back and saw a wall of the most fierce women. I was so proud, and wanted to be with them. So I got up from my chair and stood with them in support.”
While the long-term impacts of Tea Time are unknown, many women living with HIV have been using this project as a template to self-organize in their areas. It may have started as research but it has been snowballing into a movement. AIDS services organizations and other community-based organizations that have historically housed programs and services for women living with HIV are suffering from funding cuts, which has led to detrimental losses in services (counseling, social support programs, logistical supports, etc.) As a result, women living with HIV lack adequate programs and services to address their unique health needs (Sargeant, 2010)2 . Tea Time has been a way to fill the gaps in services by sharing important community organizing skills with women living with HIV. Tea Time has become a method for women living with HIV to connect, create space and talk about the things that impact their lives.
1 Whitbread, J. (2012). Tea Time: An Overview of an Emerging Method. (MES final paper) Toronto: York University Tea Time is a method that is performative and dialectical using trickster pedagogy masked in colonialist ‘tea party’ traditions. Based in feminist and popular education frameworks, Tea Time shifts the power relations by enabling a collective, communal learning experience as a means to create and explore group knowledge. As a contemporary model of feminist consciousness raising groups, Tea Time brings diverse communities together to deconstruct our understanding of time, place and social relationships, in warm, inclusive, food filled environments. 2 Sargeant, S. A. (2010). Barrier in Access to Primary Health Care for young HIV+ Women: A Qualitative Research Study. Vancouver: Youth CO and Positive Women’s Network.
HOW TO HOST A TEA PARTY
rganizing a tea party might seem a little overwhelming, but you’ll soon realize that they are much simpler than one might imagine. Here are the step by step details on how to start your own tea party:
1. Decide who is going to be in charge of “hosting” the tea party. This can be one person or a team. In some cases you can ask an organization for support. As the host, you will coordinate the majority of the logistical requirements. Feel free to delegate tasks. The more people are involved in the process, the more they will feel ownership in the tea party. 2. Choose a location. Tea parties can happen anywhere—in someone’s home, a park, a community centre, an AIDS service organization, a woman’s shelter, it doesn’t matter. What does matter is it is hosted in a place that is accessible and where people feel comfortable. 3. Guests! What is a tea party without a few guests?! You need to invite people to come and talk to you. What you might want to figure out is who you’d like the guests to be. You also need to think about how many people can comfortably fit in the space, as well as how big you’d like the group. Smaller tea parties are more intimate and generally people will have an opportunity to talk more.
4. Take out the china! You cannot have a tea party without teacups, a teapot, a kettle, tea, and don’t forget some milk and sugar! But note that any cup for drinking hot beverages will do. Decolonize your tea party and break historic and sometimes oppressive molds; (re)appropriate your grandmother’s china; drink iced tea in the summer—make it work for you. Most cultures have some sort of history of drinking tea; use what you’ve got and explore your own roots! 5. Baked Goods! You’ll need something to snack on during the tea party. Some people enjoy sweets, but many like savory baked goods. Feeling like you have to feed everyone can feel daunting. Suggest making it a potluck and ask guests to bring something if they’d like.
Note: this is where you may have to tap into your networks and find new people to come. You can ask local organizations to put up a flyer or refer contacts to you, ask people that you want to get to know better, or just invite friends.
TIPS ON FACILITATING TEA TIME
ow that you’ve got everything ready for the tea party, what are you going to do with your guests? I encourage you to use the Tea Time method, which outlines that tea parties are spaces for raising individual and collective consciousness on the issues that most impact the participants’ lives. By framing a tea party in this way, it becomes a place to share, learn and grow stronger as a community. Remember it is up to you to help frame the purpose of the tea party; it won’t happen automatically. Here are some tips to help you get started: 1. Set up the room in a circle so that everyone can see each other and no one feels left out. Having the food in the middle or close by is never a bad thing. 2. It might be helpful for the group to determine guidelines about how you’d like to be together before you start. Helpful ones are to share the space, turn off cell phones, and respect each other’s differences. Feel free to add others. 3. Give the tea party a theme! Look in the news and see if there is an issue that you could bring up as a topic of conversation— for example, the impact of the criminalization of HIV on women or what if the cure for HIV came tomorrow. You could also change the learning environment of the tea party—bake treats together—learn to knit, cross-stitch or quilt—invite affected loved ones into the circle—write letters and send them to other tea time groups.
5. Ask what topics others would like to talk about. Has anything happened in their life that they would like to share? Then ask the group if anyone has experience or advice on this issue. To dig deeper, ask if they think that the issue is specific to the people in the group? Do other groups or communities also experience the issue in the same way? This way the group can start to connect their individual experience to larger social and systemic issues. 6. Make sure to leave time at the end for everyone to reflect on their experience. This might mean doing a closing exercise or asking them to write something down. Letters are always a wonderful way of sharing.
4. Have each guest introduce themselves and share a portion of their story. This is a good way to get to know each other. You can also use an icebreaker for new groups, or a check in for reoccurring groups. It also might be a good idea to consider putting a time limit on each person speaking. If you don’t feel comfortable cutting them off, try using an egg timer or a small alarm clock. Talking sticks can also help.
My Teacups & Letters
To Someone Like Me, Over a decade ago I tested HIV positive. I wouldn’t say that it was the best day of my life—far from it—but it was definitely the most life changing. Since that cold day in January, I have had to constantly rethink and reframe the way that I look at the world. Some days are easier than others. I’d be lying if I said that I didn’t envy those who didn’t have to think about such things. One thing that I am grateful about is my deeper understanding about the frailty of life and the importance of LOVE! Love in the sense of partners, friends, family, community and supports. I am privileged to have a wonderful family that has been there for me and given me hugs when I needed them, educated others who
were ignorant, and tried to raise both money and awareness to support others living with HIV. I am eternally indebted to them for that. I have also experienced quite the opposite due to others who are misinformed and act based on ignorance and fear. When I think about these times I realize that this is just the tip of the iceberg and I get sad. Other people don’t understand how painful these times can be—but I know that you do. I think that it is wonderful that you are drinking out of my teacup with other positive women. Just so you know, this teacup was given to me by Laurie Edmiston, the ED of CATIE. It was her grandmother’s and she gave it to me for my 10 year HIV-iversary to be used specially for this research. Enjoy & keep it close.
Hello I wanted to tell you a little bit about my teacup and why I chose to give it to you. When I was a teenager my great, great Aunt Jenny passed away leaving a bunch of old things that no one wanted. One of the items that my family was going to get rid of was her old china tea set. I really loved herâ€”she was so cute, so I wanted a keepsake. Her tea set has become one of my most treasured items. I feel it fitting to share one with the community that I also adore. I have always loved having tea parties. Playing dress up, baking treats and gossiping with the ladies have always been high on my list of things that make me happy. I also know that there is more to this than these seemingly surface level things. Sharing tea makes us feel good, and gives us on outlet to discuss our innermost personal feelings in a shared space. Through tea we can collectively learn and create new meanings, share laughter and tears, raise consciousness, build community and personal networks and slow down time. I might be blabbing on now, but these are some of the things that I think about when I think of tea parties. I am so happy that you are part of this movement, that you are connecting with other women living with HIV in your community. The fact that you exist reminds me that I am not alone. In a world that is moving at such a fast pace, this feeling is comforting.
Dear Friend, At the time of my diagnosis I was 21. I had just moved to Montreal to start school and a new life away from my ex-boyfriend. I got away alright, but I guess he gave me a little parting gift. Since testing positive, I have had difficulties connecting with other women living with HIV, especially young women. I have to this date met only a few women with whom I really connect with and have developed strong friendships with. One lives in London, England, another in Buenos Aires, Argentina and a few in Canada. I have connected with them only because of the work I do, because as you know there are no secret clubs or safe spaces for positive women. When I lived in Montreal I felt so disconnected, I never had a single person to talk to that understood. It wasn’t until about 3 years after my diagnosis that I met another young woman— interestingly enough we got it from the same guy.
You know, as a white girl from the suburbs of Toronto, I didn’t think that it could happen to me. When it did, I think that my family and friends were also confused for the very same reason. It made a lot of us realize that HIV doesn’t discriminate, in fact it preys upon ignorance—and I was exactly that. Whoever you are and however you contracted it, it doesn’t really matter. We’re all just people living our lives, trying to make sense of it all and doing our best to wade through the confusion. Hopefully someday people will realize that. Thanks for reading this, it felt great writing it down.
Tea Time Friend,
Writing this letter to you has been very therapeutic. Putting pen to paper and feeling my emotions flow feels really good. I often judge my words and what I say—so instead of that I am just trying to write. Sometimes it has been very difficult living with HIV, but for the most part I have just seen it as just another hurdle in life. HIV has not been my only challenge, and I’m almost sure that it won’t be my last. It is however the one that gnaws away at me from time to time. It also likes to remind me that life is tough—but I just try to remind it that I am tougher!
day I remember that article. I think that it saved my life in many ways. Just knowing that she existed and was doing fine really helped me when I found out about 7 years later.
When I was a little girl I read an article about a woman who was HIV positive. She looked like me, some blonde haired girl, with ripped jeans and whatever else was cool in the 90s. She looked totally normal, not sick and dying as I had always seen in the media. She even had a boyfriend that was negative. Even to this
It is amazing how people can change our lives so much even if we don’t’ have the chance to meet them.
Today I feel like I am that girl. I look better than I’ve ever looked, feel healthy and am happy. Plus I have the greatest partner in the world. Not only is he amazing, but he is very cute and negative. He supports me and tries to understand what I am going through when I’m feeling down.
All the best, xx
Dear Friend, I wanted to start by telling you a story….. For months my friend has been telling me about a friend of his that is positive. I have complained for years that I never meet anyone like me, a young, queer, artsy lady, who likes dance parties, crafts and baking like she’s 75. Anyways, I’ve been dreaming for years about sleeping with someone positive. A woman who I could also be friends with would really just take the cake. So my friend finally introduces me to this woman who lives in a different province. I cannot tell you how excited I was to finally meet her. She is really cute. So I quickly write this huge, gushing message telling her all of these things. I invite her to hang out and be part of a discussion with other positive women that I am hosting in a few weeks. It goes on for quite a while and ends with “I’m really glad that we finally got to meet.”
Her response, “I feel bad… there must have been a miscommunication. I am not positive.” It was really heartbreaking. I tried to explain to my negative friends how crushed I felt, but they couldn’t understand. They just responded with, “well we all want to have a special friend that’s like us..” I know that my desire goes much deeper than that. I envy my gay HIV positive friends for having such a large community of people who they can seek out for support, for love and for sex and connections. I find it really hard to find other HIV positive people, men or women to make out with. I dream of a positive utopia, where disclosure wouldn’t be an issue and it wouldn’t matter who we slept with. I’m really excited to be part of your tea party. It reminds me how much I need to be connected with other women living with HIV, because they understand in a way that no one else does. I hope that this network thrives and that it continues to grow and reshape the movement one tea party at a time. Jessica xox
If you are openly living with HIV I’m sure that you’ve gotten lots of advice from a number of different people. Most of it is probably not from people living with HIV. Despite their good intentions they have no idea what it’s like to be a woman living with HIV. It can be really tough sometimes because they do not realize the complexity that exists with having the virus. Last year I experienced stigma in a pretty big way. While visiting my partner’s family overseas, his aunt decided to go through my bag while we were out and found my medications. The next morning she called my partner and began to yell in a fit of rage. It was so painful—I was speechless. I’ve never heard such hate. To make matters worse it was directed at me. We were forced to leave her home and stay in a hotel and were harassed for the remainder of our vacation by her threatening remarks. She pretty much called me every name in the book—it was horrible. I don’t wish that on anybody.
When I got home I felt like I needed my family so badly. I called my mother right away to get some of the support that I needed. Unfortunately she was unable to console me with “oh these things happen sometimes.” What?!?!? “To who?” I asked her. I was dumbfounded. I wanted to tell you this story because as much as others try to understand or try to put themselves in our shoes they cannot. I think that it is really important to have positive women in my life. Sure we all have different backgrounds and a diversity of experiences, but I think that it is wonderful to have someone who understands just how challenging some days can be with HIV. xo
Dear Friend, This teacup was given to me by my partner of 2+ years. He is amazing and completely supportive of me, my HIV and of others living with the virus. I came home one evening to find a cute vintage tea set waiting for me on my kitchen table. You now have one of the cups. I will think of you and hopefully you can think of me when you use it. I’ve been living with HIV for over 10 yrs now and despite my ups and downs I feel really good. I’ve tried to see my glass as half full, or more recently all full (1/2 water and 1/2 oxygen). One of my positive mentors told me once that she felt like her glass was
1/2 empty and needed love. But when she had a romance with a handsome admirer she realized that her glass was in fact almost full—he put her over and years later she feels comfortable and secure with her status. I guess I’m really just rambling, but I hope that you realize that your glass is closer to full than empty. And if not, there are some friends in the community here waiting to top it up for you. All the best xx
Toronto, Ontario Friday, February 10th, 2012
Dear Positive Woman The thing that I wanted you to know is that you are among a group of incredibly strong and resourceful women. We have faced adversity and risen to its challenges. I have been living with HIV for almost 25 years now. I have come through the dark days when there was no treatment for HIV and there was a lot of sadness and despair at that time. Now there is every reason to be hopeful.
The support of other HIV+ women is, I believe, very important. Even simply knowing that there are other positive women out there getting on with their lives is helpful to me. I hope that life brings you everything that you desire from it.
Hello beautiful woman, I am a quirky thirty something young old lady. I was diagnosed about 10 years ago this year! Whew it feels like it was yesterday. Yes my husband knew, I didn’t, yes he messed around and managed to splatter our names on international media when he fell trap into Canada’s HIV criminalization laws. Yes it was “the end of sanity” as I knew it. But that is not who I am. In the midst of a new diagnosis, media attention and being shunned by friends, I soldiered on. I knew that education was my only way forward. Although the last decade has mostly been a blur for me, I managed to go to college first, then university, and am now working. Yes I have heaps of debt but so does Donald Trump! This too shall pass.
Orillia, Ontario Tuesday, February 21st, 2012
Hi Lady Friend, I was diagnosed with HIV 20 yrs. ago and the nurse practitioner in charge of my care told me that this was the best time ever to be infected because so many advances were being made in HIV medicines, etc. Well, 20 yrs later, I’m still alive; I’ve never had an opportunistic infection; my T-cells are almost 1400 and I’ll be 64 this yr! If your situation is similar—“Congratulations we’re both survivors.” If you’ve been infected for much less time, then even more advances have been made and your chances are even greater. HIV is a chronic disease and if you adhere to your medical routine (take pills regularly) you should also be a long term survivor. Much Love xxx ooo
Montréal, Québec Saturday, February 25th, 2012
Dear Poz Friend, It is great to have this opportunity to meet you. I am a 57 (in April 2012) year old Jamaican born Canadian who has been living an HIV+ life since my hubby passed away in January 1994. This is when I found out about his and my status. Life has had its ups and downs, but I focus always or most of the time on the positive aspects. I love God, so I am too blessed to stress. Things are okay with my medication and other routines, and I am able to function pretty normally. I am a teacher by profession, but as an openly HIV+ woman, I have difficulty getting good jobs! Stigma and discrimination overpower my efforts often. Just google my name and you will see why. Well, I hope we get many opportunities to connect with each other. Until next timeâ€”take very good care of you and yours.
Bonjour, Chaque expérience de notre vie nous permet de s’ouvrir vers le monde et d’améliorer notre sagesse. Je suis maintenant à ce “Tea Party” et j’écris cette lettre… à une femme et écoute d’autres femmes dévoilant leur quotidien avec le VIH. La science a fait de grandes avancées, Bravo ! La justice n’est pas encore au diapason et la société suivra ces deux mouvements… Il faut se souvenir qu’il faut transformer notre prope esprit, accepter notre situation et s’ouvrir vers le mode. Je t’embrasse ma chère. Que chaque respiration que tu prends soit la plus belle de ta vie…
et n’oublie pas ma belle que nous sommes toutes entreliées. “Garde un coeur heureux en tout temp.”
Hi My name is Maggie and Iâ€™ve been HIV+ for 16 yrsâ€”June 18, 96 to be sure. I will be 68 in April and am a very proud grandma of 6. As for HIV, I have never been ill, and my stats are always great! I send love and stay strong!
Richmond Hill, Ontario Monday, March 5th, 2012
Hi there. I’m a 37 year old positive woman and I’m a mother of 3 kids my life has not been the same since I found out, but my kids and family are so great with me that I don’t even think about been HIV anymore. I hope that other women who are HIV get and have the same or more supports. good luck to whoever get my letter.
I was 27 when I found out I was positive. I had just gotten out of a 4 year relationship and went on vacation with my sisters to celebrate my new found freedom. I met a local guy and for two weeks got to know him and felt I trusted him. I had always been smart when it came to sex but my downfall this time was that I was too trusting. We were safe in the beginning, but all it took was one night. I remember even having the sense to ask in the heat of the moment, if I anything to worry about and he assured me everything was
good. About 2 weeks after I returned home I fell sick. Doctors told me I had mono but deep down inside I knew something else was wrong. I asked to be tested for everything, HIV included. The more I analyzed my symptoms and researched on the internet I had a sick feeling I was HIV+ before my doctor even told me. I remember thinking, no way, I can’t be HIV+, its got to be something else, I’m just being paranoid. When the Doctor verified I was positive I was devastated. My life was changed forever. I later found out that the guy had known his status all along and I felt utterly betrayed. Who would knowingly do this to someone? Why didn’t he just make sure we were safe? Why didn’t I have the sense to make sure we were safe that night? After going through a range of emotions I settled into the fact that this is something I have to live with and it’s up to me to choose how to move on. I feel lucky that I have an amazing support system. My current partner is negative but he has been my rock through this whole journey. My friends and family have also been a huge support to me and I am so grateful to have such wonderful people in my life. I have also been blessed with an optimistic nature. I have always been someone who tries to take the positive out of every situation. I’m not going to let this beat me. In the 3 years I have been living with HIV I have learned so much about myself and the trials and tribulations of what its like living with this disease. If anything this has given me more strength and motivation to go after the things I want from life. I think its important for positive women to be able to connect with each other + support each other. This tea party is a great way to meet other women—to share stories and feel connected.
Iâ€™m a 28 yr old young lady who has been living with HIV for the past 10 yrs. Living with my status was hard at first but then I realised that I could fight this disease and survive. I spent most of my time volunteering before I became a mom a year ago. Being a mom is one of my greatest accomplishments. I enjoy every minute with my son. HIV is only 1/10 of my life. I have this disease but it doesnâ€™t have me. My advice to you is to fight for your life, let this disease know that you are the boss and that you gonna win. I used to hate before I realised that love was the way to survive this life now. Smile as much as you can. Laugh and Love anyone. And remember you alone can direct a positive future.
I am a single mother who has been living positively for 1 Â˝ yrs. Honestly speaking this can be scary when you donâ€™t have any support systems. When you meet other women who have been living positively for more than 10 years, you then realise that there is HOPE, HIV is not as scary as it is portrayed outside. Support groups have really helped me to come to terms with my status and I look forward to having a long life and see my daughter go to university and get married. Just look at it like one who has diabetes rather than cancer. Live positively.
Hamilton, Ontario Sunday, March 11th, 2012
Hi there, If you get this letter know that it is coming from someone like you who has you at heart and is thinking about you all day and stay strong knowing that you are not alone in this journey. Pray as you have never prayed before and believing that God is able to give you the peace to carry on. Stay blessed.
To an amazing woman An EGG represents new life that is hidden within the safety of a shell, tucked securely under a warm body of hope encounters a simple but persistent knock inviting this new life to venture out into the unknown and a treasure is discovered within. BUTTERFLY wings have been formed with brilliant vibrant colours, slowly spread wide to take flight in directions that are imprinted on oneâ€™s heart. A FLOWERâ€™s sweet fragrance draws the bees, humming birds and many eyes and noses to enjoy the variety and contrast of the beauty of a bouquet which has been gathered together.
In a CANDY the sweetness that bursts forth when taste buds are given the chance to sink their teeth into its core. GEMSTONEs are formed through great pressure, stress and after time they become a treasure of great beauty and value sending forth new energy. A STRING made with one cord may easily become worn and broken but many cords woven together as if one will endure much stress holding together to weather any storm. A CANDLE shining and brightening every place it is taken, willing to light another knowing that it will not be diminished itself but that more brightness will be spread in the darkness where others hold their own candles waiting to be lit. Keep being the light, sweetness, fragrance and beauty in this world of ours. Lots of love from Hamilton
Dear beautiful woman, I am just writing this letter to tell you that you are wonderful. Life can be hard sometimes, but itâ€™s those struggles that make us stronger. Keep your head up and just remember HIV cannot beat you down. Donâ€™t let it. You have so much potential and HIV doesnâ€™t deserve to take that away from you. Instead of thinking of yourself as a trampled and stepped on flower, think of yourself as a one that may have withered in the cold and dark winter, but grew back more beautiful and strong as ever in the sunshine.
P.S. you can e-mail me anytime @
Hi There, I’m from Toronto, Ontario and I see that my mug has travelled quite the distance to end up in your hands; which is great! I’m 31 years old and I was diagnosed with HIV when I was 21 years old. I’m coming up on my 10 year anniversary this June. It’s not quite an event that I look forward to celebrating, but it is a part of who I am and I have come to terms with accepting that. The 7 stages of grief perfectly describe how I have felt since first diagnosed with this disease… • Shock & Denial • Pain & Guilt • Anger & Bargaining • Depression, Reflection & Loneliness • The Upward Turn • Re-construction & Working Through • Acceptance & Hope For a long time, I grieved the life that I had set to live and still do to this day. I attended a tea party just like you did here today and it felt really good to relate to other women who are in the same position as both you and I. I felt relief to see other women such as myself, who “got” what I’m going through because they are going through it too! It felt so up-lifting and I’m glad that you are here today! If you would ever like to chat you can always email me at
Washington, District of Columbia Tuesday, March 13th, 2012
I have been HIV positive since 1996 and on meds since 1997. When I learned that I was positive I wanted to know how I would live. I take to the Dr. She told me about my med and other groups for support. I love my life and my family give me love and support but god loves me more. I work for
as CAB member we are active in our comment.
Hi my name is Lashern . I have been HIV positive for 5 years. My sister keep your head up be blessed. My address is Washington DC . If you need someone to talk to or write I am willing to be your writing buddies. Please write Be blessed And hope to here from you again.
Much blessings and greeting from Washington, DC. I am writing you as a positive woman for nineteen years and am so happy to be a part of the letter writing project. Please continue to correspond if you like so we can get to know one another and share our stories and create our own Tea Party. Renee
Hello Lovely Lady I am Maria better known as Ms. . I have been HIV + for 25 years, a non-progressor. I am 60 I am in special studies at for women living with HIV & AIDS. I am an only child, never married and I donâ€™t have children but I have 3 kitty kats. My experience with HIV has been challenging more with the stigmatism and loneliness. Knowing when to disclose or not. But due to my blessings health wise, I believe my work is cut out by encouraging and letting other women who are HIV+ know that they are beautiful, and the world is theirs. Have a blessed, fun, prosperous & great day
HIV has brought me a lot of people, places & things. I am grateful and I know that everything happens for a reason. One gift HIV has given me is the willingness to take “care” of myself. It is more than willingness it is a drive an ambition. Part of taking care of myself now is knowing when to let go. I am involved on a consuming level with a network of wlwhiv. The network is important but I need to prepare myself & ICW to not be so deeply involved. Every network needs new blood. My blood is definitely not new. I don’t know what to do next.
For Someone Special This teacup is for you my beautiful sister. We were pre-ordained by God to connect thru this cup. So that you may know that you are not alone. I have asked God that whomever receives this letter may be blessed beyond their wildest dreams. So know that you are blessed and be happy in life with love. Someone who cares,
MUST JESUS BEAR THE CROSS ALONE AND ALL THE WORLD GO FREE? NO THERE’S A CROSS FOR EVERYONE AND THERE’S A CROSS FOR ME. By Wilhelmina In the mid 90’s I heard Miles Monroe speak so passionately about life purpose and it moved me to want to know what the purpose of my life was. The next day I began to search for my purpose in life. What did God create me to be? I can remember reading a book by Benny Hinn in 1995 and coming to the part of the book where it asked the question “Can you pay the price.” I remember so clearly after reading several testimonies and the many trials he had gone through, saying to myself NO I can’t pay the price. No I don’t want to do that knowing it would be hard. Well if you don’t know let me tell you that when God wants something out of your life, he is going to get it. You see I did not know it at that time, but soon after I would indeed began to carry my cross. In 1998 I came down with a cold and it would not go away. So after many days/weeks had passed I sought medical help from my doctor, who three days later told me that I was HIV positive. Well for those of you who have heard these words directed to you I don’t have to tell you what that sounds like coming from a doctor’s mouth. Yes I was a Christian at that time but there was nothing in me at that time that could’ve prepared me or those words that had just came out of that doctors mouth, so I thought. This information became the most devastating, life changing news of my life. For the next eight years I would indeed began to pay the price for my cross. I cannot tell you the many days I sat in a dark room wanting this cup to pass from me. At one time I wanted to take my own life. I know the only reason I did not take my own life was because I knew it was the one sin God could not forgive, I know this for a fact. I went through my own personal HELL.
Today I educate others about this disease, the prevention and care. I also help facilitate local and regional women’s support groups. I consider myself to be a generous, compassionate person, and one who takes great pleasure and satisfaction in serving those less fortunate than me. I have a passion for educating people about HIV/AIDS, but particularly to young people and AfricanAmerican women. I constantly say to those infected, “Live life to the fullest, keep yourself healthy mentally, spiritually and physically. If you are on medicine take it everyday and the way they have been prescribed to you. Medicine does extend your life”. I went on a Women’s Encounter with the women in my church. In the country hills of Lancaster Pennsylvania is where I truly embraced the meaning of the cross for my life. You see I had an opportunity to literally carry the cross of Christ on my back. As the tears poured out and rained down my face I found myself crying out Lord I gladly bear this cross. As I was carrying the cross I envisioned every one I had ever met who was HIV positive, those WHO had died, alive, and even those whom I had yet to meet. It was in those few minutes when I knew this was the purpose of my birth to the nation. This is what the Lord had ordained for me. He allowed me to know that I was graced with everything I would need to do this work. My heart was for the people and I was no longer ashamed. For then I knew that ALL of my shame was indeed at the foot of the cross, all of my healing is there and all of my deliverance is there. NO! CHRIST WILL NOT BEAR THE CROSS ALONE! I WILL GLADLY BEAR MY CROSS, WILL YOU?
Hi My name is Claudia . Sensible and very energetic. I’ve been living with my partner (HIV) for 12 yrs. It was hard for me to accept until I got into networking with people like myself. Now I’m okay with it and would like to share experiences and knowledge. I volunteer at a HIV clinic doing groups and women only groups. It’s been a pleasure to be able to connect with someone in another region and outside of my circle. I would like to hear from you ASAP. My cell number is . We can get to know one another more and share our knowledge and learn from one another.
Toronto, Ontario Thursday, April 5th, 2012
Hello Beautiful Lady My name is Marvelous , I am from Zimbabwe, and I came to Canada in 2006. I have been living with HIV since 1995. I lost two of my babies, the time I gave birth in Zimbabwe there was no treatment available to mothers to prevent transmission to the baby. I am open about my HIV positive status, and have the support of my friends and family. I believe itâ€™s their support that has made me stronger in my journey with HIV. My vision is for everyone talk about HIV like any other disease, and for everyone who is positive to get support from community. HIV is not the end of the world, live positively and be strong.
Telly In times of trouble, helplessness, hopelessness, pain there is hope in God who provides all the answers in His own way. All things work out for good for those who love the Lord. When I was diagnosed with HIV it felt like the end of everything: love, hope etc. God gave me the opportunity of coming to Canada and here in Canada my HIV which was a monster at home has made me to be where I am today, with you my best family.
Bonjour et bonne après-midi je t’aime, oh je m’appelle FIFI. Une femme extraordinaire et très forte dans certaine circonstance. Je suis + positive depuis 18 ans et je suis fier de ce que je suis, la seule chose que je peux vous dire c’est être fier de toi-même car la vie et courte et on doit le vivre. Je t’aime t’aime. Je suis heureuse toujour de ce que je fais, vie alors ma belle. Je sais que tu es belle et tu seras belle toute ta vie comme je le suis. C’est d’elle FIFI.
Hi everybody I am very happy living with HIV because I have accepted and learn to comfort myself with the word of God (Bible). It has helped me alot.
Dear Friend, I am a HIV+ woman who has been living with HIV+ for ten years now. I believe HIV changed me positively, I started to live after my diagnosis. I decided that life is for the living and that I have to make a change for the best and live a legacy. I believe anything anyone else can do I can do better. HIV does not have to define you, you define yourself. Take control of your situation and let HIV know you are in control. I hope that you will gain something from this letter and that you will make a positive outcome of your status. Sincerely HIV positive woman
When you learn that HIV virus has contaminated your blood, it feels like the world has turned down on your. All of you freedom is taken away— Your self esteem is shut down— Your well being is disowned automatically— It takes time to accept the situation as I was always day dreaming of my funeral. At some points I letrally cry with other people in my funeral.
What I could say is never loose hope, never give up. We are lucky to have found and meet with consoling families like Women’s Health, Black-Cap, APAA, ACT, PWA etc. It takes a while to kill the shadow + trauma but as we meet we get healed and gain our confidence back. We get rebuilt because we get a change in life, change as food we eat, people we interact, medication on daily basis and adapt with change.
Ottawa, Ontario Thursday, April 20th, 2012
Hello My name is Brigitte. I am the mother of 2 grown children (42-41) and a proud grandma of a 8 grandkids (22-5). I just turned 65 in October. I was diagnosed Sept 22 1994 after being told in the mid 80s that I would never get AIDS as I had a hysterectomy. I married my second husband (no ex) in Jan 94 knowing that he was HIV+. I divorced him in 97 after I found out he cheated on me with my gay friends.
I met my HIV- partner in July 97 and have been happy since then. He is my soul mate, lover and a great grandfather to all my grandchildren. My reason for not giving in to this virus are my grandkids and my life partner.
I have been positive for 15 years. There have been lots of struggles, frustrations, hurts and heartbreak over the years but I am still here. We just need to take time for ourselves, live every day to the fullest and enjoy life. Not the easiest sometimes but after one or two bad days, things have to brighten! xo
Dear Lovely Lady, A friend of mine wrote a poem about living with HIV. One of the closing lines of the poem is: I am strong- We are stronger. I very much believe that together we are so strong, together we can change our world.
Victoria, British Columbia Thursday, May 30th, 2012
I have spent a wonderful few hours in the company of lovely, strong and amazing women. I am so blessed to be enjoying this company while hosting a tea time here in Victoria. What a wonderful idea. I have been positive for at least 30 years and although, at the time of my diagnosis in 1986, I was told I would not live more than a year or two at most, I didnâ€™t accept that. I had a 7 year old son who I felt I could raise better than anyone else. I needed to live. It has not been an easy ride and at times, I didnâ€™t think Iâ€™d make it. But here I am, now 57 years young, healthy happy and living an amazing life.
Wishing you all the best, Romari
Hello fellow poz woman! How are you? Me, I’m busy these days, I work a lot and have quite a bit on the go. I’m not sure what to write so I’m just going to tell you a bit about myself, and how I am in my life as a positive person. I live on the west coast, on Vancouver Island. I’m 31, going to be 32 in July. I was diagnosed when I was 21, so now I’ve been positive for about 11 years. I feel great, I take my meds and eat good and exercise and that seems to keep me well. Considering that for the first 5 years after my diagnosis I was only expecting to live for 10 years and being told by one doctor that I possibly had less than a year to live. That was before I started taking medication, I put that off for as long as possible and possibly longer than I should have. Anyways I was younger then and so incredibly afraid, of damn near everything, afraid of meds fucking me up, so afraid of any buds finding out. I didn’t tell my parents for 5 years, didn’t seek support, never met another poz person for so long, was alone for a long time and silent.
so much better in his life, could have lived longer if he’d taken care of himself. This is what saddens me the most about him. I don’t think about him much these days, everyday that passes puts more time and distance between all that business. But it still affects me, affects aspects of my life. I guess that’s what trauma does. Something interesting happened the other day that I haven’t talked about yet, and you are anonymous and it’s on paper so I can put it out there. A couple of times I’ve gotten what I think are sort of ‘messages’ from him. It’s weird and I’m no psychic and I could be imagining things. But I was unloading some beautiful flooring for my cabin I’m building and I just got this super strong feeling that he was there, beside me, and he was genuinely happy for me and loving towards me, it was such a good feeling and it came out of nowhere and since I’ve not had any feelings like that with him it felt like it came from somewhere else. Geez I dunno. Who knows what’s up with stuff like that.
Things are much different now, a lot of my fear issues are passing. I’m sorta active in the poz women community and have made some amazing friends who I know I will have the rest of my life. I have also met some amazing new, gay, straight and everything in between. The poz community is so vibrant I think I get more out of it than from my regular group of friends sometimes.
Anyways there’s a small part of the big picture. I could write for a day if I had the time.
Hmm what else. Geez it’s been such a long road and there’s so many facets and issues, things that have happened, people who’ve affected me. I guess it all started with my ex, who infected me. He was positive since he was about 9 years old he figures, maybe younger. He had hemophilia and was infected with HIV, Hep C and Hep B through blood transfusions. How he lived for so long is beyond me. He told me about the Hep C but that was it, and we were together for 2 years. I found out I was positive pretty soon after we started sleeping together, I was concerned about the Hep C. He still never told me he was positive…I found out 2 years later when he got very sick. His mom told me. He lived for a few more years, he died in 2005. He was 25. He could have done
Well take care of yourself and your loved ones. It’s a long road and you’re not alone so make sure you get the support you need. Lotsa love. a.xo
I’m , 45 years old, a chef, married for 12 years with 2 boys, 17 and 15 from a previous marriage. I was diagnosed with full blown AIDS approximately 2 years ago when I was hospitalized I could no longer breathe on my own, was in constant pain from nerve damage, had lost most of my hair and finger nails, was covered with sores and had oral thrush and could no longer eat without discomfort. At this point my CD4 count was 20 and viral load was 431 678 parts per million. So here’s my story… First the nitty gritty, there were 4 sexual partners in the 2 years between my first husband and my second husband. 2 of those are negative as are my 1st husband and my current husband (huge relief). 2 partners are unaccounted for as I have been unable to trace them. There is quite a bit of guilt and shame associated with the realization. Enough said about that, if I dwell on things I can’t change, anyways moving on. Doctors had determined that I have been HIV positive for about 10 years before my diagnosis judging from my medical records and illnesses leading up to the hospitalization. My GP and many specialists had not recognized the symptoms and signs generally due to my demographic (middle aged married mother of two, no drug use, monogamous, business owner, no hepatitis). They chose to pursue other avenues ie. leukemia, mental illness, allergies etc.
There was an incredible sense of relief to finally know what was wrong with me as well as a huge feeling of shame because this illness carries such a stigma. My immediate family is very supportive, my children and husband included. Unfortunately I am unable to be open with the majority of family, some friends and colleagues because I know that they are not capable of processing the information and treating me with the same unconditional love and or respect I have always felt (not so unconditional anymore). My life has changed dramatically in the last 2 years, some great, some devastating. I have really good days and really bad days but lately the good ones are becoming more frequent. I have sold my restaurant to focus on my recovery and family. I feel that I have some of the best medical attention that is available which I’m truly grateful for. I wonder about my future, if at some point I will be able to work again or travel to the places I’ve always dreamed of. I often feel like I live a lie because I’m not honest with many of the people in my life. I don’t have the energy I need to participate in the world the way I would like to and feel guilty for putting my family through all of this crap. In the end I am recovering. It’s been a long journey. My viral load is below 40 parts per million, but my immune system is still struggling with my CD4 count at 110 and I have found a way to manage the pain. I have just started reaching out to find ways to process all of this and find my way back, to what I’m not sure but I’m hopeful it will be good.
I am happy to be getting together with other HIV+ women. I have been HIV/HEP C co-infected for about 21 years. I have managed very well on the HIV medications, but have experienced numerous side effects as osteoporosis, hypothyroid and lypodystrophy to mention a few. I am very happy to be alive and surviving HIV & HEP C. I will be 60 this year. I volunteer at Vancouver Island Persons Living with HIV/AIDS Society in the capacity of peer supporter. I am there to support people infected or affected by HIV or HEP C. I mostly listen, help with referrals and talk to those coping with HIV. I also help with getting them connected with other agencies or programs that could help or services that they are entitled to. I really enjoy this work and itâ€™s important for me to get out of the house and do something rewarding. I also enjoy gardening, movies, reading, concerts and outing with friends. Itâ€™s been very nice meeting other HIV+ women through tea time. Penny
I discovered I was HIV+ more than 25 years ago when there were no medicines to fight this disease. Then is was a struggle to stay alive. Tears streamed as a flood of HIV positive friends died between 1987 and 1994. We tried so many alternative therapies – some worked – others were not helpful. Eventually my situation was so dire I was put under palliative care. These early years helped me to understand the impact on others of positive test results, long periods of illness and continual weakness. Today, there is medication in BC and the rest of Canada, but in poor corners of the world it is still not available – often not to children. Nothing in my personal life could prepare me for observing the impact the disease has on grandmothers, women and orphaned children; or the mental anguish of realizing that most people are dying when treatment alone would save their lives. I continue to cry inside. I co-founded a grassroots organization, positively AFRICA (pA) after visiting several African countries in 2005. pA ‘twins’ community groups, school children and interested individuals with small but important projects relating to widows, grandmothers, orphans and those living with HIV. A dynamic little group of volunteers remain with dedicated to helping those affected by the AIDS pandemic in Africa to live with hope and dignity. pA has successfully raised well over $100,000 for small African community projects. I am involved in the local AIDS Community, both as a trainer (Therapeutic Touch and Body Mapping), a learner and an elder.
Vancouver, British Columbia Monday, September 24th, 2012
Hey beautiful woman, I am a â€œyouthâ€? who is a mother. I am positive since 2007. I am a loving compassionate and I understand. I struggle each day to find & love myself. I am learning. I am a recovering addict been clean for three years. A survivor from the DTES. I have an ear and a shoulder to cry on. Please feel free to email me!! @ I love you my sister! Stephanie
Hi Tea time friend My name is Valarie I live in Vancouver B.C. in the Downtown Eastside. I am a grandmother and Loving it! Her name is and my grandson is . I have been positive since 2004 at age 48. I am an advocate to stop stigma! I also travel around North America speaking about health, housing, HIV and food security. I have taken being positive into a very positive aspect of my life. I believe the creator made me positive for a reason. Life is so different now I have fought many battles and have won! I have started an organic fruit & vegetable co-op for people living with compromised immune systems. It is called Vancouver Organic Harvest Society. This mug is from my heart to yours. I would enjoy hearing from you if you would like.
with good thoughts to you all the best Valarie
Jansi (Hello) in Cree, I wish the best for you. Just remember you are beautiful. I have been positive since 1995, Iâ€™m a mother, a grandmother. When life gets rough, brew a cup of tea and relax, breatheâ€Ś. Love you sista
Hi There! I hope this letter finds you well. My name is Melanie and I’ve been living with HIV for 25 yrs. I feel that my life came to an abrupt halt when I was diagnosed at the age of 23. I was in denial for 9 yrs until I was hospitalized with PCP. Looking back I wish I had the courage to seek support earlier in my diagnosis. There was the public stigma but also my own selfjudgment which kept me closeted for so long. I feel that is important to connect with others who have HIV because it helps to know that we are not alone in our struggles. I’ve found that the more open I became, the freer I felt. I am no longer living a double life in which I felt deceitful and not true to myself. It’s important for us to take care of ourselves and I so by taking vitamins, getting massages, taking hot baths, eating healthy and walking as a form of exercise. I think the best self care is to surround yourself with people, things, pets, plants, etc that FEED YOU NOT DEPLETE YOU.
Hello my friend; My name is Charlene and I have been HIV + for 22yrs. and am living life to the fullest in Victoria. The teacup I have contributed belonged to my Great Grandmother in P.E.I. this cup came from 1 of her only trips off the island. I guess why I brought this cup is to encourage you to travel and talk and grow. If you are not living openly I encourage you to meet and talk with as many positive women as you can, we are a phenomenal group of people who have love and support for our sisters. I donâ€™t know you yet and I canâ€™t wait to meet you. Stay healthy, stay strong, stay connected.
Montréal, Québec Wednesday, October 24, 2012
Greetings! I hope my letter finds you in the very best of health and spirits. I am thoroughly enjoying the togetherness and networking that results from these great tea parties! I am a mom & grandma of 57 years old and having been infected perhaps in the late 80s, I am eternally grateful for my longevity so far and plan on seeing many years to come! After years of being down I threw off the “chains” that HIV sometimes causes to “tie us up” and I now enjoy my life to the fullest. I hope that you have been able to see the glass “half full” and I also hope we can communicate some day. Your sister xxxxxx
Half of the worldâ€™s population infected with HIV are women. In many ways this is an advantage as I do believe that women are ultimately the strongest of the 2 sexes and we are the ones who are going to address HIV and take measures to eliminate this virus. Women take action. Women take responsibility and women are leaders in this struggle. It is our irony, but one that is in our favor. All of this to say, be an advocate, activist in making changes in the elimination of HIV. Together, as women, we can do this. Because women ultimately are the ones who do most. We take care of others and we will take care of and responsibility for addressing HIV.
Dear friend, My name is Christy. I live in Montreal, Quebec. I’m of the great English speaking, HIV Positive, + hepatitis C community in a Province where health services in English are hard to find. The clinic at the hospital where I go for services is one the that places I occasionally meet an English speaking woman and sometimes we exchange ideas & suggest resources & health services. One lady suggested to me this tea party thing and I became interested. I think that the more HIV positive women who are willing to share their stories, strength, & struggles with other women, well, it empowers us.
I was diagnosed HIV & Hepatitis C in 1994. At first I thought I’d be dead in a year, but no I’m still here. Most days I go on as if everything is normal, but then I hit a glitch when it comes to disclosure in different areas of my life. I live alone and work one day a week cleaning. I’m on disability & am scared to pursue anything worth while in the way of employment or any kind of career. I’m a truly, loving & caring person. I’m perfectly willing to have somekind of long distance communication so if you’d like to contact me see mailing info on the reverse side.
Hi, I’m Elaine… I’m 57 years old & have been living with HIV+ since the 1980’s. Yes I did expose myself to high risk behavior/lifestyle. For the most part I have blessings, in spite of the sufferings. Today I participated in my 2nd tea party…I would be wonderful to have more women involved in these get-togethers to discuss issues & matters that affect us in our sisterhood! Love, laugh & live…but do believe.
New York City, New York Sunday, March 10th, 2013
Why hello beautiful! Had anyone told you just how beautiful you are today? How radiant you are? And how special your life is? We if you haven’t heard it from anyone else today, you will hear it from me! My name is Kia. In this hour I am sitting at my window, sunlight is embracing me, flowers surrounding me and I am so happy and grateful. THIS IS THE BEST MOMENT OF MY LIFE. I say this because at this very second that I write to you, I am so happy. So in love with the world, so in love with the city, so in love with love and so in love with my life. My birthday is in 1 week and 1 day. I will be 23 years old. Thats 23 years that I have lived with HIV. I always seem to have the blues around this time of year. My mother and I used to celebrate our birthdays together. Her birthday is tomorrow. She would have been 56, but she passed away 9 years ago. So my birthday is always a happy/sad time. But I have come to realize that it is vital for me to embrace this day as a celebration. Another year I get to be here, when so many didn’t
think that I would make it this far. I’ve never had the chance to meet another poz woman, for my dad forbid me from having my relationship to HIV after my mother’s death. So I’ve spent the last 9 years feeling alone and confused, hurt that I couldn’t speak to anyone about the things that were going on in my body. I had no sense of guidance and didn’t know who to trust. I’m past all that now and am ready to have the love and support I deserve! So I sit here basking in the sunlight, writing a letter to another beautiful and positive woman. REMEMBER! You are amazing. Your life is amazing. You are sexy, beautiful and so special, so unique! All the love in the world Kia (feel free to contact me
new york city
May the warmth of this letter comfort your mind, body and soul. Today, I, as well as you battle a disease that stigmatizes, not just communities but women as a whole. Rest assure that as you read these words you are not alone. Be strong, fight on and remember that “without women, a house is not a home…”
Amsterdam, The Netherlands Sunday, September 1st, 2013
Hi My name is Liz. I am from the United Kingdom, near to London. I am 41 and have been living with HIV since 2003 – wow that means I will be 10 years living with HIV on October 20th! Please thank oh my. I started taking meds 1 year ago and after some problems everything was going well. I met my husband whilst working with the network of PLHIV in Nepal. He is Nepali and it is the best thing ever, without HIV we would not have met!
I hope we have a long and happy life getting old with my husband and maybe even children – which was something I never though could be possible – I have hope and love will see me through, in days when I don’t feel so great. I wish you well, happiest + good health and maybe one day our paths will cross. With love, joy and solidarity
Hi, I am from Nepal. Now I am living in Amsterdam since 6 month with my husband. I am 30 year old. I am HIV positive and I have been HIV since 13 year. I am midwife also but I am not worked now. I have one son. I miss my son and my country. My family is so supportive. Here in Amsterdam now I fell so bad because all day I stay in home nothing to do. Here in Amsterdam I have problem about language but here people so helpful I donâ€™t understand dutch they speak english and last I am sorry to not write much because I have problem English. Rita
I write this letter not knowing who will eventually receive it, but somehow we are already connected! Our nationality, age, skin colour and interests may differ but we both happen to be the host of a virus that condemns us. And because of that we probably have more in common than most others could imagine…
However in Italy it is still very much more of a taboo and the stigmatization is very high! So I feel I live a bit of a “double life”, hiding my secret in his environment whilst being an activist to promote transparency and breakdown the stigmas outside of Italy. This is very confusing and frustrating for me…
So let me share with you a little bit about myself. My name is Pauline. I will be 37 years old next month and I was born in The Netherlands. I contracted HIV in 2006 from my ex-boyfriend, whom I never saw again after breaking up shortly after that! In 2010 I met my current partner , with who I got engaged in 2011 and have been living with together in Florence, Italy. We tried to have a family but after 3 miscarriages we stopped trying. It turns out that my virus seems to be a bigger problem for our relationship that it did in the beginning.
Besides the challenges of living with HIV, personally and socially, I like to focus on the positive aspects it has brought to my life!! For example, I have met so many amazing people, many of which super inspirational women who have enriched my life in countless ways. Whereas first I felt excluded from society, cornered by the opinions and condemnation of ignorant people nowadays I realize that exactly those restrictions gave me a choice…The possibility to choose how I would live my life, from that day on, whether I preferred to be a victim or responsible for my own happiness!
I find it very difficult that I cannot be open about my status with his family and friends. In the Netherlands, and amongst friends all over the world, I have been completely open about it and can share my feelings, health issues, information and challenges.
So here it is, I chose and still choose on a daily basis to own my life, to be the best I can, to face my fears and question its origins, to let my heart guide me to be vulnerable and say it’s ok to be scared/excited/try/fail/laugh/cry/listen/be heard and to at least try to ENJOY as much as we can everything we do!! I am proud to be a woman, I respect myself just as I respect others. I am grateful for this life and for the people in my life and I hope I can contribute to making this world a better place just by simply starting with loving myself & those next to me.
Nairobi, Kenya Sunday, October 27th, 2013
To my newest friend and teacup recipient I feel sure you are someone who understands the same yet different journey we are on. I was diagnosed with HIV twenty years ago when in my twenties and taking on the world in a travel adventure of a lifetime, wow what a shock. Like many women I thought nothing bad would ever happen to me, life was exciting and fun. HIV stopped me in my tracks, I couldn’t eat, sleep, think or talk, I was numb for a couple of years they said I would die and back in those early days nearly everyone did. I’m not really sure what exactly got me through those first few years, I guess our will to survive kicks in when we are in trouble. In 1996 I travelled back to where my journey was interrupted, Kisumu, Kenya. I met many beautiful people who listened to my story and helped me heal. I laughed again for the first time in years; I also fell pregnant with my beautiful son who is now sixteen years old and full of life. Life is full of many surprises, I would never have dreamed I could have children while living with HIV. I was one of the first women in Australia to take ARVs (ugh) they were terrible, but I kept swallowing three times a day, with each tablet dreaming I might actually live long enough to see my son grow up. Well my son is sixteen and my daughter is three, these days I dwell just a little bit on my life and hope I will live long enough to meet my grandchildren. Twenty years on and I still swallow my tablets religiously, I don’t think about the future but try to live in the here and now, I try to find beauty in everything I do, I take people as they are and appreciate all the moments that make up my day.
I do work with families and women living with HIV, I am able to share my experiences and give hope and a lightness to those who are newly diagnosed. I wonder if all women get so busy with living that they forget to take really good care and be kind to themselves, I know I do, I work full time and take care of my family, sometimes, most of the times, I forget to take time out for myself, to check in on my health and to just be kind. Do you take time for yourself? I hope you do, often people around us are so busy they also forget to check in on our HIV and our health. I have been living with HIV for so long now that all my family forgot I have a chronic medical illness, they don’t even ask me anymore, they just assume I will live forever, will I? I don’t think anymore about it either, although I am often reminded by health care professionals or people I talk to about HIV, some things never change I suppose. I do think I am harder on myself and internalize stereotypes about people living with HIV, I often stigmatise myself before I give others a chance. If it wasn’t for the association with negative stereotypes I think my life would be fairly “normal” well whatever normal is? I do wonder what life would have been like if I didn’t have HIV, would I be who I am today? I guess not, HIV has shaped who I am and how I live my life, it doesn’t consume me but I do think it has defined me in some ways. I’m not very good at talking about myself, I would love to write a more detailed letter but I am limited by time.
I do hope this is the beginning of more detailed letters to come. I would like to thank you for taking the time to share a very small piece of my journey and do hope that you will take some time to think about yourself and your journey with HIV. Much love. In sisterhood, Rebecca xxx Ps- my teacup is from my great grandmother who brought it with her on a journey from England to the colony of Australia. She was a strong woman who loved life and took every opportunity that came her way. I pass this cup and saucer on to you from three generations of strong women for you to start a new legacy and join the ranks of women who have shared a cup of tea when times get tough. Please take care of this cup, it is very old and has traveled the world.
Hallo, My name is Edelqueen . I donâ€™t know exactly what am suppose to say to you but I guess I have to talk about my status. I was born with HIV, and found out when I was 14 years. I am so tired of talking about my status and I wish HIV could be just like malaria in peopleâ€™s minds. I am 25 years old with a degree in Applied statistics with IT; I made sure I worked even harder to earn a living outside HIV programmers. I am very blessed; God has protected me from illnesses. I have never been sick ever since I was started in ARVs, and this I attribute to God and to my adherence coz I am still on first line after 9 years. As you receive this letter, I pray that God bless you. He may free you from whatever negative feelings or circumstances around you. Be strong and courageous. There is no excuse for hopelessness.
It is an honor sharing my life with you. My name is Consolata , I was born on March 6th and I am 23 years old. I am a student at Daystar University and I major in Communication. I like reading, singing, drawing, definitely shopping, writing stories fact or fiction. I am HIV+ and I have lived with the virus for 23 years. I started taking ARVs at the age of 11. Most of the girls I know blame their mums for their status but not I because I know how my mum contracted the virus and I also know that in the year I was born the PMTCT method was unavailable. Many people expected to hear of my death but it never came so they eventually gave up. I was taken to a boarding school when I was 7 years and my mum explained my situation to the matron in case of an emergency. Little did my mum know that by revealing that, she had dug my life of misery in school? Whenever I had a rash that usually had purse, I was scrubbed using a hard bristled brush and a detergent famously known in Kenya as OMO. She would scrub me till I bleed then pour spirit on my body from head to toe. I never told anybody not even my mum because I believed what she told me that I was extremely dirty. As the years went by, I grew and by the time I was 11 I was a very curious child and I wanted to know the reason for my taking drugs every single day, so I went through the drugs and I never understood the chemicals there and the words were hard to understand but what caught my eyes was the word HIV and ART. I knew what the words meant; I never asked my mum or even told her anything. She had already prepared me for the moment through counseling. As I went through High school stigma was a major problem and I remember that when I was in form two, there was a girl who was being mistreated because of her status and I decided to do something about it. I was a member at CDC therapy group so I
got a chance to ask the seniors if they could sensitize both the teachers and students on how HIV is transmitted. They came and talked to the students and I also revealed my status, at first no one believed that a person can be healthy, bright and very curvy and still be HIV+. That was until they knew that I take ARVs and the girl they mistreated wasnâ€™t. After that the girl got involved with CDC and she started taking ARVs. By the time I left High School stigma towards HIV+ people was a thing of the past and girls were encouraged to get tested, that was my first accomplishment and I was very happy. I was introduced to ICW when there was a training on SRHR for young women in 2010; there I met most of the senior members in ICW since the young women who came were around 4 including me. I won my way into their hearts and you know that these are women who are well versed in the issues of HIV. I was only 20 then and the youngest member in the group. I met women who had children born with HIV and when they heard that I was also born with HIV and I was grown healthy and very full of life they all said that it also meant that their children would live long. After that training I came to our Organization DACASA that my mum started with my dad before he passed on in 2000. I shared my knowledge on SRHR with the young women. In 2011 I went to Migori where I got a voluntary job as youth promoter that was only after a short training. I worked for six months then I came back to Nairobi and started going to campus. In 2012, I decided to volunteer for a legal firm that dealt with the legal side of PLWHIV. They fight for the rights of PLWHIV. They were involved in the Anti-counterfeit case where the government insisted that Generic drugs were counterfeits (ARVs). The organization is Aids Law Project. I was involved by mobilizing people to come and support our mentors who had taken the case to court. We won the first round. I am also a volunteer for ICW Kenya and I am lucky that my mentor is none other than Teresia . I am
also a board member ICW Kenya Representing Nairobi and I was chosen by the young people, Board member ICWEA Representing Kenya. In 2013 I attended a meeting in Uganda that was creating young women Advocates on SRHR and the Global plan when we came back home a few months later we had a training on SRHR and from being the one being trained I ended as a facilitator. The training was for a day. It was a success and my group and I are hoping for more training since this was an amazing start. I believe that my respect for my mentors, my need for knowledge from them, and my charisma in life has made me the kind of person that I am today. I never make decisions without consulting them first. Some of those who have made me stronger wiser and appreciative of those older and wiser than me are: Lillian , Dorothy , Pamela , Rukia , Dorothy Teresia and above them all my mum Patricia . My quote in life is by Emerson Waldo and I added some of my own words. â€˜To leave a mark, whether a child, a garden patch; to know that one person breathed easier because you lived this is to have succeeded.â€™ This is just a summary of my life and who I am; allow me to finish by telling you once again that this is an honor. Yours Truly, Consolata
My name is Helen , a WLHIV who know her status in 2009. It was my third year campus. It was difficult for me given that my elder brother had lived with HIV for a couple of years. I am married to the father of my two year old son. He is also HIV positive. He loves me he has always supported me. He is my treatment buddy, both of us are on Seplvine. Life has not all been rosy, it was difficult for me to discuss my status to my parents considering the fact that m책y elder brother was also positive. But we managed to disclose our status to both our families. It has been a nightmare because my mother in law has not really accepted my sero status. She blames me for injecting his son. I thank God for my family, my husband and son coz they give me strength to keep me going Kind regards
My name is Evelynn I am a single mother of two adorable boys; I turn 35 years on December 5.
I discovered that I live with the HIV virus in August of 1998. It is 15 years now and I live in full hope of a better day. I lost my job in 2010 when I fell very ill, I had Cryptococcal Meningitis. Everyone in my family thought I was going to die. I was in very bad shape. I also got raped in 2002 and conceived my very handsome 1st born son . He is10 years old today also with HIV. The Lord blessed me yet again this year with my 2nd son . He is 6 months going on 7. He tested PCR negative. I breastfed him to date and did and still do my best to prevent him from contracting HIV because what I know today, I didn’t know 10 years ago when I had . My life has been full of adventure. I have been through the ups and downs of life but pray everyday and take each day at a time.
Even on days when my boys and I would go hungry we never forget to thank God for granting us life and allowing us to spend time together. I sell maagi sandals to put food on the table and also work online in the house as a transcriber. I wish I had a lot to write about my family but I don’t like to discuss it much. My step father passed away in 2006, my biological father went insane due to taking lethal alcohol but I am his only child. My mother and two siblings are residents in America. They live their life there. My aunts uncles and cousins….I hardly hear from any. We are just the three of us, my two boys and I. My son’s father left us and fled the country after baby came into the world. My children and my passion to help people living with the virus, are my strength. To watch my children grow drives me everyday. Also to see others live their lives positively and to stomp stigma is my greatest desire. It is not easy especially in today’s world, much as stigma my have reduced, it is still a big problem among us. There are still few individuals who treat us differently because of our status, but I shut them up and live my life to the fullest. I believe that to be diagnosed with HIV is NOT a death sentence, it is not the end of life, but the beginning of a new good and clean life.
My name is Jane . Am 29 years old. I work with an organization known as Kenya Network of Women with AIDS (KENWA) as a programs manager. I have also worked as a Monitoring and Evaluation Officer and as a field coordinator. I joined the organization 5 years ago when I discovered my HIV status. The organization not only helped me heal but also grow professionally and career wise. This was through sharing experiences and encouraging each other via support groups and colleagues who are HIV positive including the executive director who has been HIV positive for the last 25 years. Am currently on medication and am hoping to settle down soon in marriage with my fiancĂŠe who is also HIV positive. My HIV status has not stopped me from achieving my dreams. Am currently in the last yr master undertaking in International relations. I also hope to do my PHD sometimes later in the future. I hope to continue championing and working for the rights of people living with HIV most importantly women. I also hope to work in an international organization of a UN body in order to continue influencing policies in favour of women. You can get in touch with me at or via my telephone number + my post office box is Nairobi. Hoping to hear from you to take this conversation further. Yours Faithfully, Jane
Dear ICW Global Chair Am Lilian twenty six years old a young woman living with HIV. I was infected in 2010 with my boyfriend who by then was proposing marriage with a wedding. So after a 1 year relationship with this guy we had a misunderstanding and thatâ€™s when he broke the news to me via a phone message. I broke the news to my family members who up to now still havenâ€™t accepted me, but my dad has been very supportive. I stayed in denial for one year till I met my mentor who is called Teresia , she has helped me a lot in disclosure and helped me to go public about my status. I am now a youth representative in an organization called Personal Initiative for Positive empowerment and I also run a youth support group which has twenty youths. At ICW am a sexual and reproductive health and rights advocate for young people living with HIV. Am grateful to ICW for making me the young woman that I am. Yours sincerely Lilian
Dear Sister, I call you sister because I believe despite the distance you and I probably have the same experience. My name is Florence , I found out I am HIV positive in 2005. Because of many situations I probably spent some time being angry about it. Now however, I make the most of my life. I am a mother to a handsome 16 year old boy who I love to pieces. I am working on having a second one and itâ€™s a mix of excitement and scary moments. I use my experience and opportunities to nurture young women especially those who feel isolated in the workplace (I do this online mostly) and try to get them in touch with the care and often find the counseling they need. I hope we can be able to meet or email some more because I would love to get to know you more and learn from your experience. Until then. Be happy and stay peaceful. Greetings to your family and friends (your support system).
Dear Global Chair Am honoured to share my story with you, lucky enough am engaged in many community work and have gotten to hear and engage in many community work and felt the urge to engage you in my experience. A lot has been happening being in the society many of our youths are stigmatized and isolated, which lead to them not being informed in the happening around, to empower them it has taken a lot, those well people are trying but its been a lots of work, am a mother of one daughter, 4 years now and would luv to know if am really and not asking for too much. Advice is needed and will be accepted, there are times am disturbed by how to engage in dating, it takes time but at the moment many youths are engaging in undetected, abrupt, can say emergency sex, but are trying a lot to let my family in though its been had, may be confused but just wish to involve myself and get to know how to make people understand that its normal to live positive and have a better life. Can say a lot but know am all happy to know that we are one and ready to mingle and share experience. With luv Georgina Luv u
Dear Beloved Sister, It is a great pleasure to write to you this letter. I hope you are well and enjoying the safe space the movement is creating for us. When I learned my HIV status in 2001, I was pregnant and did not have direction nor any support. But connecting with other women, especially the community of women living with HIV (ICW) I have grown emotionally and now support other young women to realize and enjoy the safe space. The movement of women can change how people view matters and issues, we can really change the world and bring our issues to the fore. Dear sister, be strong, support other women, provide a shoulder for other women to lean on. You are great, a pillar in the community. Let us share what we are doing, amplify our voices and share lessons learned, both from our work and experience & perspective living with HIV. I hope we can connect and talk sometimes. Have fun & Love you. Yours Sincerely, Teresia Nairobi, Kenya
Jessica Lynn Whitbread works in the realm of social practice and community art, often merging art and activism to engage a diversity of audiences in critical dialogue. She has been praised for her ability to make difficult conversations seem fun and effortless. Jessica often uses her own body and experience as a queer woman living with HIV, as the primary site of her work. In her head the entire world is a pantless tea party, full of awkward yet playful interactions that challenge hetero-normative and mainstream assumptions about bodies, sexuality and desire. Her ongoing projects include No Pants No Problem, Tea Time, and PosterVIRUS (AIDS ACTION NOW!). In 2012, Jessica was elected as the Global Chair of the International Community of Women Living with HIV (ICW). At the age of 32, she was the youngest Chair in the history of the network. She is also a Steering Committee member of the direct action group AIDS ACTION NOW!. Jessica lives in Toronto with her pomeranian Austin.
9 780992 134808
Tea Time: Mapping Informal Networks of Women Living with HIV began as Jessica Whitbread’s master’s thesis. She was interested in finding a w...
Published on Dec 19, 2013
Tea Time: Mapping Informal Networks of Women Living with HIV began as Jessica Whitbread’s master’s thesis. She was interested in finding a w...