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February 2010

Section 3: Community

ACCESSline Page 27

HIV Stigma in the Heartland

Provided by Positive Iowans Taking Charge (PITCH) to use universal precautions. It’s their job to keep themselves safe from getting HIV from a patient. I tell people, because I DO NOT want to risk giving anyone this terrible disease. But I am still worried because 25% of the people who are positive are unaware of their status they can’t tell people because they don’t know their status. I am hoping speaking out, will make people realize they need to use universal precaution with everyone, since you never know who is infected and who isn’t. What could you have done better? Health Care System here in Iowa needs to be educated that HIV/AIDS is here, and they are responsible to keep everyone safe by using universal precautions.

Confidentiality Standard Breached

Stigma: External Source of Stigma: Health Care SysPositive Iowans Taking Charge is dedicated to reducing the stigma of for Iowans living with HIV/AIDS. At the 2009 Wellness Summit, Iowans created puzzle pieces illustrating times when they were or felt they were stigmatized, judged, or discriminated against. When all the pieces were put together showed the state of Iowa. The Wellness Summit is a time when Iowans across the state come together in a safe, non-judgmental environment. Attendees come from across Iowa to renew mind, body, spirit, and to overcome the social isolation that often characterizes life with HIV in a rural state. Here are some of the stories shared by participants.

Not the Only Numbers

Stigma: External Source of Stigma: Health Care System, positive community, family, community Describe how you felt when you were stigmatized: As a long-term survivor, I get frustrated when I hear someone say, “Your numbers are so good, you shouldn’t feel bad.” OR “You look so healthy; I can’t believe you don’t feel good.” My life is made up of more than just 2 numbers, my CD4 count and my viral load. Yes, while I am lucky that my numbers are so good, almost 1,500 CD4 count and undetectable viral load, these are not the only 2 numbers in my life, not the only numbers that determine how I feel. I have been positive for 15 years, I am now 40 – and more health issues seem to come with this magical number. I take 15 pills a day, but can take over 20 depending on the secondary infection of the day. I have woke up or gone to bed with a migraine the last 8 of 10 days, I am suppose to take 2 Imitrex in a 24 hour period, but depending on the day, once in a while take 3. My migraines just don’t seem to know they are not supposed to be bad for another 12 hours. I travel over 130 miles to see my doctor, which is supposed to be a 2 ½ hour drive, but since I have to stop 2-3 times to go to the bathroom, and road construc-

tion, it can take over 3. I get my meds from 6 different sources, at 3-4 different times, some monthly, bi-monthly, every 3 or 6 months. I now have to write on my calendar when to call for refills. I don’t mean to complain, because I do appreciate having access t them, it is just another hurdle that has to be jumped. I have insomnia 30 days a month if I don’t take the 4 pills to get me to and keep me asleep, I am up all night. I am very grateful to have made it to 40, 15 years ago, I didn’t think I would still be here, but after taking meds for 15 years, I am exhausted 70% of the time. I now need around 10 hours of sleep each night to be able to function the next day. So, yes, my CD4 count and viral load numbers are VERY good, and I am grateful, but they’re not the only 2 numbers in my life that tell the whole story. My life is full of numbers and together they all tell the story of my life, of my health. What could you have done better? Education, letting people know when I don’t feel good.

Universal Precaution – Your Job NOT Mine

Stigma: External Source of Stigma: Health Care System Describe how you felt when you were stigmatized: The decision to tell people about my positive status is sometimes a very hard decision. On one hand, it’s nobody’s business, on the other, I feel compelled to tell others. I have gone to local flu shot clinics to get my annual flu shot. I am still shocked when the nurse heads towards me with a needle in one hand and a cotton swab in the other. Living in rural, small town Iowa, medical personnel seem to think that HIV/AIDS is not here. I have had to tell 2 nurses now that they need to put gloves on, I am HIV positive. It is a reality check to see t hem stop mid-step. One said thank you for telling, the other asked if I usually bled after the shot. This makes me frustrated by their lack of awareness; it is not my responsibility to tell them, it is their job

tem Describe how you felt when you were stigmatized: It was the 1st health crisis I faced after moving to Iowa, I had reached a fever of 106 degrees F, which caused me blindness, and loss of ability to stand. An ambulance came to my residence and one of the emergency workers was related to the landlady. Later, after my hospitalization, word spread to some of

the other neighbors that she had a “little black man living there who has AIDS.” It was a distressing time, and within 30 days of my hospital stay I had to move to another city.

Isolated

Stigma: Internal and External Source of Stigma: Self, Community, and Media Describe how you felt when you were stigmatized: For the 1st 6 years, I didn’t tell anyone that I was positive. I didn’t participate in any events with my ASO, so I didn’t know anyone else who was positive, I felt very alone/isolated. What could you have done better? Taking a risk, meeting others and having someone to relate to really helped me to feel not as isolated and alone.

Victimized By Gossip

Stigma: External Source of Stigma: Home Environment Describe how you felt when you were stigmatized: When approached, a statement was made that neighbors had been discussing my health, and had concluded that I had “AIDS”. I felt angry, and responded with, “I’ve been discussing with myself, and concluded t hat my health was none of their business.” TTSTIGMA continued page 28

ACCESSline, Iowa's LGBT Newspaper, February 2010 Issue, Volume 24 No 2  

ACCESSlineIOWA - Iowa’s LGBT+ Newspaper. Gay and lesbian, bi, trans, and HIV+ news for Des Moines, Cedar Rapids, Iowa City, Waterloo/Cedar...

ACCESSline, Iowa's LGBT Newspaper, February 2010 Issue, Volume 24 No 2  

ACCESSlineIOWA - Iowa’s LGBT+ Newspaper. Gay and lesbian, bi, trans, and HIV+ news for Des Moines, Cedar Rapids, Iowa City, Waterloo/Cedar...

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