Concealed Revealed Truths about Invisible Illnesses Heather Outwater
Revealed Truths about Invisible Illnesses
ÂŠ 2016 All rights reserved. No part of this publication may be reproduced without permission. The opinions expressed in this book are those of the author only and not those of York College of Pennsylvania. This book is an experimental class project for purely educational design purposes. Designed and Written by Heather Outwater Photography by Heather Outwater The body copy text is Palatino Light Other fonts are: New Caledonia Semibold & Bold Printed by Lulu Publishing
preface Hi there, What you have here is a book which contains content written and designed solely by me, with contributions from interviews. Itâ€™s called a documentation book and is the culmination of a semester-long documentation process in my Publication Design course as a senior undergraduate Graphic Design major at York College of Pennsylvania. A documentation book is defined as a process where the student goes through a research and collecting period through a chunk of time, grows a bit as a person, and along the way, designs a book with the intention to say something to the reader. Personally for me, this book was a way to explore the lives of the people around me and my own life pertaining to invisible illnesses. I interviewed multiple people throughout the semester using certain prompts and in the end, composed content that allows insight into the reality of living with an invisible illness.
I need to thank the people who helped me with this book, because it would be nothing without them. Thanks mom for coming up with the idea initially. Thank you to all of my interviewees: my mother Mary, Amanda S., Katelyn C., Darian H., Savannah P., Emily S., Kayla C., Rachel M., Tori B., and Katelyn K.; your answers to my questions opened even my eyes to the reality of this life. Some names have been changed to keep anonymity. Thank you Chris for being there always. Thank you to my classmates for constructive criticism and humor! Thank you to Professor Patterson for giving us this project and for your honesty. Stay healthy, Heather O.
Dedicated to my mom, Mary. You are relentless and invincible, and I hope that I am as selfless and giving as you are when I grow up.
table of contents · Introduction | 1 · Facts and Statistics | 3 · Stigma and Misunderstanding | 5
table · Struggles of Everyday Life | 15
· Changed Your View of Yourself | 25
· Coping with an Invisible Illness | 33 · Helping Others Understand | 41 · Last Word | 49 · Glossary | 51
intro duction My name is Heather Outwater. I have an invisible illness: ulcerative colitis (UC). That illness does not define who I am, and it also does not define the dozens of people in my life who are also dealing with a similar situation. Invisible illness is a broad umbrella term that, for the purposes of this book, stands for mental and physical disorders, diseases, and illnesses that cannot be seen from the surface.
Having an invisible illness can be debilitating in a plethora of ways. In this world, those who have one don’t quite have it easy and can feel like less of a person because of the way they are treated, the amount of activities that they can no longer do, and how much it changes their lives overall. This book will attempt to explain what life is like while dealing with an invisible illness from all aspects including stigma, the struggles of everyday life, and healthy coping. From interviews, direct quotes, and some humor from real people, one can really get the truth in a raw and honest
way. When I say raw, I mean it. I don’t want to hold back on these stories. These things really happen to people, and they cannot be overlooked. This book is very self-explanatory, but underneath it all, I am trying to change the way people perceive those who have an invisible illness. I hope that people will have some more compassion and understanding and try to see past what is on the surface; too often we make hard and quick assumptions based on what we see at a first glance.
I also want this book to be a kind of resource for people who have invisible illnesses so that they can know that without a doubt, they are not alone. There are other people going through the same issues and it’s okay that they are having these experiences. I hope that you enjoy this journey.
described as an illness that is not immediately apparent. Many people with one are suspected of faking or imagining their symptoms. Ulcerative Colitis (UC): an
inflammatory bowel disease that causes long-lasting inflammation and ulcers (sores) in the digestive tract. It is classified as an autoimmune disease where the immune system attacks its body’s own cells.
1. It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability. That is about 133 million people.
2. Nearly one in two people in the U.S. have a chronic medical condition of one kind or another, but most of these people are not considered to be disabled, as their conditions do not impair their normal everyday activities. They most likely look and act perfectly healthy. 3. According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who: has a physical or mental impairment that substantially limits one or more major life activities.
9. It is estimated that between three and 26 million Americans suffer from fibromyalgia, a pain disorder accompanied by fatigue, sleeping difficulties, and mood issues.
10. Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.
11. Depression is 15-20% higher for the chronically ill than for the average person. 12 â€ŚAnd more than 90% of people who complete suicide have a diagnosable mental disorder. 13. Over half of the chronically ill say the worst thing someone can say is â€œyou look great.â€?
4. About one in four adults suffer from a diagnosable mental disorder in a given year. 5. 96% of people with a chronic medical condition live with a condition that is invisible. 6. By 2020, about 157 million Americans will be diagnosed with chronic illnesses. 7. 60% of people afflicted with an invisible illness are between the ages of 18 and 64. 8. 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases.
Sources: https://www.disabled-world.com/disability/types/invisible/ http://www.restministries.org/invisibleillness/statistics.htm https://seattledizzygroup.org/2013/09/09/chronic-illness-facts/ 3
stigma misunder standing
Imagine this: You are diagnosed with multiple sclerosis (MS), a debilitating disorder that attacks your nerves. You go to the doctor for another visit, after you’ve been diagnosed, and throughout the conversation things are going fine. At the end, something slips that you did not expect.“People like you always end up in wheelchairs anyway,” or something of the like is said and it completely changes the situation. Not only are you shocked that the doctor would think that you won’t be able to walk for the rest of your life, but he has lumped you in a category without even keeping into consideration that you are an individual. This is a very specific situation, but it has happened to my mom, Mary. She has multiple sclerosis and has dealt with problems like this since October 1992.
When we talk about stigma, it can come from anywhere. From that doctor, to the cashier at the grocery store, to your closest friend, trying to make someone understand how you’re feeling and what you’re going through is not easy at all. In fact, it is probably the hardest thing to do in any situation. But we must try.
Multiple Sclerosis (MS): a nervous
system disease that affects your brain and spinal cord. It damages the myelin sheath, the material that surrounds and protects your nerve cells. This damage slows down or blocks messages between your brain and your body.
Polycystic Ovarian Syndrome (PCOS):
a condition in which a woman’s levels of sex hormones are out of balance. This leads to the growth of ovarian cysts. PCOS can cause problems with a women’s menstrual cycle, fertility, cardiac function, and appearance. Nonepileptic Seizures: a disorder
that mimics seizure -like activity. It is characterized by a loss or change in physical function, usually caused by emotional conflicts of stress.
6 · Stigma
Starting off with the heavy, bullying is something all too real for people with an invisible illness. Everyone experiences some type of bullying when they are a child. It is a way for kids to group themselves and feel like they belong by ganging up on other kids. When you’re in middle school with an invisible illness, something you cannot control and may not even know is happening to you, it can be so much more damaging. For Emily S., she was made fun of in a very cruel way. Before Emily was diagnosed with polycystic ovarian syndrome (PCOS), she was made fun of and bullied for having a really heavy menstrual cycle. She didn’t know how to control it and she would have her cycle for over six months at a time. She battled with bleeding through any protection she would be wearing. She explained to me: “The cysts on my ovaries block the hormones that are sent from my thyroid which caused all kinds of problems. On an ultrasound, my ovaries looked like Swiss cheese.”The news of this type of havoc wreaking on your body is enough, and on top of that, she was bullied often for it. To handle the inconsistencies in her body,
she started taking birth control. Once people found out at her school, she was ridiculed for that as well since she was so young. To sum it all up, she says,“The fact that people didn’t know about it caused them to call me ‘gross’ or ‘disgusting’ when I had my cycle and then the only way to treat it caused people to call me a whore.” Even teachers can be bullies. In the case of Katelyn C., teachers in her high school assumed she was faking what she was going through or falling asleep in class. In reality, she suffers from a nonepileptic seizure disorder that causes her to get suddenly tired and pass out. She even had a few hospital staff tell her family that she was just doing it for attention and that there was no evidence of it being “real.”
Just Plain Not Understanding
High-Functioning: a condition in which the person has relatively mild symptoms which, despite their mildness, are significant enough to merit an autism spectrum diagnosis.
8 · Stigma
Then there are people who are just not understanding where you are coming from. What you are saying or going through is going right over their head. This is not against their intelligence, but they can’t wrap their heads around your struggles. Darian H. deals with this on the daily. She has autism, but hers is classified as “high-functioning,” which she explains as: “I am able to be convincingly normal to strangers and acquaintances 85% of the time.” There are times, however, when she has to explain to people that she has autism. At her college, the website layout has just changed, and it is 100% different from what it used to be. “I couldn’t find shit,” she expresses. While trying to get help, Darian says she wanted to scream because the lady was trying to explain it to her and she might as well have been speaking Chinese. Darian held her hands up to say, “Please stop, I am so overwhelmed.”After she told the lady that she was autistic and needs a visual explanation, everything became extremely easy to explain and understand. Sometimes you must explain to someone exactly what you’re going through, or they will never know.
Going back to just plain misunderstanding, often people mistake what is wrong by judging you without asking about what is happening or whether you are okay. For example, my mom has been called drunk or asked whether she was on drugs when walking. Multiple sclerosis causes her to be off balance and lose her footing often, and people make assumptions that are so much more hurtful than they need to be. People sometimes don’t realize how when they’re trying to be funny by saying something demeaning like that, it is really perpetuating these harmful assumptions. Something else my mom said is that so many people assume that if she turns down an event, she doesn’t want to go and she’s blowing them off. She has always told me that it’s not “I don’t want to do it,” it’s that “I physically cannot do it.” Explaining this to people who don’t feel the same pain and exhaustion every day is exhausting in itself.
Fear of the Unknown
What Katelyn C. has experienced: “Well as far as my seizure disorder, I noticed stigma a lot with my professors. Especially when I told tell them I had stress induced disorders, some of them would start complementing me after every little thing I would do and tell me how proud they are that I got through it. Like my one rec professor told me I could miss as many classes as I needed to or that I didn’t have to take the exams on the scheduled date if it would add to much stress on me. My family also started treating me differently and would get oddly happy around me and pretend like there wasn’t any problems going on in our family.”
This idea can be pretty damaging. What I mean here is that people with an invisible illness are sometimes treated very carefully by their friends and family. While this is generally a good thing, it puts the person on some sort of invisible pedestal that they don’t need to be on, and it can make one feel like more of an outsider. Katelyn C. says that her family started to treat her this way once they accepted that her seizure disorder was “real,” whether it was conscious or not. They started treating her differently and would get suddenly happy around her or pretend that there weren’t any problems going on in the family. While her family is looking out for her well-being, it isn’t right to keep someone in the dark because they’re afraid of upsetting him or her. Yes, if it is something really heavy or damaging, then maybe, but holding out on someone all the time makes things worse. Sometimes parents can be so worried that they can’t help but say the wrong things. Savannah P. struggles with bipolar type 2 and a severe panic disorder and she told me that after she was in a crisis unit, her parents were very afraid that she
Bipolar Type 2:
characterized by at least one episode of major depression and at least one episode of hypomania, which is marked by elation and hyperactivity. Severe Panic Disorder: diag-
nosed in people who experience spontaneous seemingly out-ofthe-blue panic attacks and are preoccupied with the fear of a recurring attack. Panic attacks occur unexpectedly, sometimes even during sleep. Stigma · 9
would try to hurt herself. “I’m afraid I’m going to get a call saying you’re in the morgue,” her dad had said to her. This is damaging in two ways. Most obviously, this is a very intense thing to say to someone who, just months before, was in a very dark place. Also, it’s not putting much faith in her. Most of a person’s recovery is using their own strength and building themselves back up. However, support and some amount of faith is needed from close relationships. If your parents don’t believe in you, it makes it that much harder to recover in a healthy way.
Savannah P.’s thougths: “Whenever I say “I can’t do this anymore” in an innocent nonchalant way my mother will either text me concerned or immediately call me thinking I’m at a ledge again. After I was released from the hospital some of my professors treated me differently. They seemed unsettled by me. Another person treated me as though I was fragile for a while until I proved myself to be okay.”
Stigma · 11
Insensitivity “You’re so much more than your disability! You are not your disability.” Believe it or not, this is being insensitive. My disability actually makes up part of who I am. It’s not completely who I am, but I would not be the same person without it. While struggling through hard times, it really does not help to hear someone say this. Instead of dealing with things in a healthy way, people expect me to just be able to suppress it and not let it get to me. I feel that people can be insensitive when impatience comes to town and messes everything up. My mom experiences this while at the grocery store. Sometimes she just doesn’t move as fast as people want her to. MS also deteriorates the brain over time, causing her thoughts to move slower. The messages sent from her brain to her body can be slower than someone who does not have MS. Staying with impatience, Savannah P. told me that her parents become super impatient when she becomes extremely anxious when making phone calls, but it’s not her fault. When someone is anxious already, having people rush you and say things like,“Why are you like this?” causes the anxiety to shoot straight up. She also told me that by having bipolar type 2, she can act quite impulsively and then intensely regret her 12 · Stigma
actions afterward. People have told her,“It sounds like you’re using it as an excuse.”When she hears comments like this, she says,“It’s like a slap in my face.” She was using her disability to explain to herself why she was acting that way and how she could prevent that behavior in the future.
struggles of everyday life Social Anxiety
There are some invisible illnesses that include different levels of anxiety, both social and personal. This doesn’t happen for everyone, but I feel it’s important to include because it can create problems during regular life when one is just trying to live normally. Someone who does not have an invisible illness may not have this anxiety, so it may seem unfair to someone who does that he or she has to deal with it on a regular basis.
Darian H. says she has a hard time communicating to people without getting nervous.“I can’t construct an acceptable ‘hello’ in time to say it,” she mentions. While this may seem trivial and not such a big deal, usually people do not have trouble saying hello as a habit. For Darian, it becomes a hard process, and because of the way her brain works, it turns into something more stressful. She also explained to me how, on the other side of the spectrum, she sometimes can over-explain things to people without realizing it. It’s hard for her to notice visual cues.“I want to ask people, ‘Is this okay? Did I go too far?’ but apparently that makes people uncomfortable too.” When people do not know that she has autism, they can think of her in negative ways, but those thoughts aren’t fair. She says,“90% of the time, my clumsy guesses about how to interact with people
are correct but only because I’ve had a lot of practice. The times I guess wrong feel like catastrophic failures.” Someone can be anxious because of their environment as well. Suffering with a panic disorder can cause this to become very hard to deal with. Savannah P. says that her parents often get upset with her because she’ll get social anxiety and not be able to go in a store by herself. While I can understand how a parent would be frustrated by this, it’s extremely important for them to understand that it’s literally part of her illness, not because she just doesn’t want to or is lazy. What they should do is either go in there with her or let her go back and go in alone when she is ready or less anxious. Treating a person like they’re not capable of doing it at all because of their anxiety really threatens their self-confidence and their ability to be confident on their own. Something else she told me is how her parents treat her when they are in restaurants. She has an on again, off again panic induced eating disorder. She’s not a fan of large crowds, overwhelming colors, or a lot of noise, and restaurants usually are composed of all of these things. Her anxiety in restaurants and eating in public in general makes her nauseous. Because of this, there are some things that are easier for her to eat in these situations.
Doctors, Medicine and Insurance. Oh My. Her parents, however, try to make her eat more and when she does they’ll say things like, “Good job, you ate a lot.” The problem with that is that she will immediately lose her appetite and feel sick at that moment, which completely erases any progress. She says,“I’ve tried explaining this to them over and over again, but they never seem to get it.”It seems that, in Savannah’s position, her parents are being very insensitive to what she’s going through, and that’s not going to change anything about her, only make her more anxious.
One, two, three, these things always follow each other. First you are diagnosed with an invisible illness (or any illness for that matter), then you need medicine to be healthy, and for most people, it is hard to afford expensive medicine, which is where insurance comes in. Insurance also pays partly for appointments, procedures, and hospitalizations, which, believe me, are a real possibility. All of these things get in the way of regular life and cause stress on a regular basis. Personally for me, I never had to take huge pills every day like I do now, go to a gastroenterologist twice a year and get bloodwork taken frequently, or deal with my insurance not paying for my medication and wondering if I will be able to be healthy while dealing with the immense stress of college. While that may sound somewhat dramatic, there is no other way to explain it. I am constantly in the position of danger if I don’t take my medicine and cannot get to a doctor, and that’s scary. One of the most frustrating and stressful things about having an invisible illness is trying to make appointments while having a busy schedule. Whether it’s a doctor’s appointment to check up on your physical health, or a psychiatrist appointment to tend to mental health, these things cannot be put aside. Personally,
16 · Struggles
What Darian H. has experienced: “Scheduling appointments seems to be a lot more difficult for me than other people. If I can’t see how something works and it does something new or different (especially people) it gives me anxiety. The ability to get my medication sorted out is a next level frustration, because the people I have to contact and sort it out with seem to think I already understand how their system works.”
and based on opinions from other people my age, trying to schedule appointments while attending college full time can be daunting at times. I live about 2 and a half hours away from my house, where my gastroenterologist is. I don’t have a car, so during the months that I am in school, I can’t go to see them. I can call if I am having a problem, but as for making appointments, I have to wait until a break comes up at school. Besides the summer and Christmas breaks, most of the other ones are only about 5 days long. Therefore, I have to balance seeing family, doing homework, trying to relax, and going to appointments in that time. It’s definitely manageable for sure, and I have learned the ins and outs of it all, but the part I have learned the most is that you have to be really organized and grow up faster in a way. I am getting used to doing things for myself now and becoming more confident in my abilities to keep myself healthy and stay on top of it all. Perhaps the main thing that people with invisible illnesses struggle with when it comes to all of this is figuring out which medicine is right for them. Even though some people may show the same symptoms and act in a similar way, everyone will react to medicine in their own way. It’s almost as if a group of people have the same illness, Struggles · 17
Personal Story but inside of each one of them, in reality, it’s a different illness than the person beside them who has the same one. Their body reacts in its own way to medicine. My mom tells me,“I always wonder what the medicine is doing to me really and if it is even helping me.”That uncertainty is definitely scary. When you add the idea that medication usually has its own side effects, it’s even more unpredictable. While taking medicine for your main illness, other small and even more dangerous problems can occur. With my mom’s MS, she was taking injections a few times a week in different parts of her body, which was supposed to help slow down and eventually stop the progression of the disease. Unfortunately, the medicine affected other parts of her body in negative ways. She always had a heavy menstrual cycle all her life, and for some reason, taking the injections caused it to be immensely worse. The medicine did help with her MS, but the side effect was impossible. She was in so much pain from the problems it was causing in her uterus that she had to stop taking it.
18 · Struggles
In March of 2016 I was hospitalized for three days due to a flare of my UC and a terrible reaction to a new medication. While I was in school I had been staying up way too late trying to get work done and only getting three hours of sleep some nights. I wasn’t eating right and I had pounds of stress on my shoulders. Due to all of this, my ulcerative colitis acted up and my colon became extremely irritated. I was thinking: my medicine must not be working anymore. I was taking four pills a day and I attributed the flare up to the ineffectiveness of the medicine. Once I was on a break from school, I told my mom that I needed to change medicine because the one I had been taking wasn’t working anymore. We made an appointment on a Friday and my meds got changed. After one day of taking new pills, my body reacted horribly. I developed a raging fever, was really weak and tired, and the flare had doubled in intensity to the point where there was blood in my stool and going to the bathroom was like someone pulling barbed wire through my intestines. I was going back to school on Monday and had homework to finish, so when my parents said we had to go to the emergency room on Saturday, I fought them. I thought: I can’t be sick like
this right now; I have schoolwork to do. I knew something was very wrong with me, however, so we went. They took my blood and did some tests and eventually said, “We’re going to have to keep you here overnight. Your insides are pretty upset right now so you need antibiotics. Also, you are very dehydrated so you need a lot of fluids, more than drinking can give you. Additionally, we need to keep checking your blood because your blood count is very low.”At this point, I was sad, scared, and upset that this was happening to me, but above all, I was nervous about missing school. I started crying and was really mad about not being able to finish my homework or possibly missing classes on Monday. I soon realized how ridiculous I was being, because my health comes first. I couldn’t perform well in anything if I was like that, so I accepted the situation and focused on what was happening right at the moment instead of worrying about school. I stayed the night in the hospital. The worst part of being there was that I had an IV in my arm that constantly game me antibiotics or fluids. It was so painful because the needle is enormous and I had a really hard time sleeping. I had to wait until the next day to see my doctor to hear what he thought was best for me, and after I spoke with 20 · Struggles
him, I had to stay another night so that the next morning at 7 am, I could get a colonoscopy. At this point, I was going to miss school on Monday. To prep for the procedure, I had to be on an all liquid diet to clear out my system so that they could see everything well. Then the night before, I had to drink about a gallon of a medicated liquid solution to further prepare for the morning. I couldn’t sleep because since it was liquid, it went right through me and I had to go to the bathroom every thirty minutes. The next morning after the procedure, I was told that the inflammation in my colon was now very small due to the antibiotics calming everything down. My blood count also went up and all around, I was better. They told me to get back on the medicine that I thought wasn’t working anymore, but to just take a higher dose, and to try my hardest to eliminate stress in my life. That is the most important thing in order for me to stay healthy. Thank you for reading that story. It was a scary experience for me, and I know it’s a lot to take in at once, but I wanted to write it down for my own catharsis and to prove some points. First of all, medicine is extremely important in the process of keeping an invisible illness calm. However, in my case, stress management is largely important at the same time. There are thousands of
people out there who have had similar experiences in hospitals, and it just goes to show how extremely important it is to find the right medicine.
Struggles are different for everyone
Amanda S. explains:
“As a kid I would always chew on or eat anything possible, from plaster off the walls to materials like paper, metal, wood, etc. The issue with having Pica is that I Amanda S. has Pica and she told me about the would never really notice that I’m doing it until after main thing she deals with on a daily basis is when I had already started. A lot of the kids in my class she forgets and becomes absent-minded. She thought I was just hungry and would mock me, espewon’t realize she is chewing on something until cially after lunch. I remember this moment in 6th grade, a few seconds or a minute in, which is a concern I was eating lunch with my class and the food would for her. She has been bullied in the past for it. be served on foam trays. After eating and while waiting People would say, “Do you eat enough at home?” for the trash to come around, I started ripping foam Some would call her a human goat and ask her off and chewing on it. Everyone at the table started at if she wanted a tin can to eat. She says there is a me, it went silent for a good few minutes, and I didn’t huge stigma that people assume she’s doing it out realize why. After that day, I got asked questions on the daily in school. One kid called me a human goat, and of hunger when really it’s more subconscious. She is afraid on an everyday basis of what people asked if Id wanted a tin can.”
Pica: an eating disorder typically defined as the persistent ingestion of nonnutritive substances for at least 1 month at an age for which this behavior is developmentally inappropriate.
think of her when they see her chewing on things, but it’s not a conscious decision that she is making. Kayla C. struggles to do everyday things that some may seem extremely easy or obvious. She has fibromyalgia which causes immense pain in her Struggles · 21
body a lot of the time. It’s hard for her to even get out of bed every day due to the fatigue and pain. Because of this, sometimes she doesn’t want to take showers; it’s just easier to lay in bed and not feel the pain. She says that she used to care about what people thought of her and the way she looked, but now she is more accepting, because that is how she can get through her illness. She has trouble walking long distances, which for her is more than five minutes. For many people, they never have to experience any of this. The act of showering doesn’t usually entail pain shooting through your body every time you take a step, but for Kayla, it’s a challenge every time. For my mom, her struggles can vary from day to day. Her illness is flexible and doesn’t always do the same things. Some days her vision is crystal clear and others, it is like there is Vaseline over her eyes and she has to wear glasses all day. This is frustrating to her because she doesn’t know if her vision is getting worse from being older or it is just the progression of the disease causing it. She has a hard time learning new skills and remembering those skills or memories. Her brain
had to almost retrain itself. She says: “I have to learn differently now.” She is also always dealing with money. One thing that stresses her out is having enough money for things. Due to her disability, she can’t work at a lot of jobs because she is a liability and it is hard for her to find a good paying job. Due to this, she does collect disability funds, which helps immensely, but it is not nearly enough to pay for all of the bills. She is currently working now from home, but the opportunities in general are lessened because of her MS. Lastly, she becomes exhausted very easily and says that doing housework is a challenge most days. “It’s like a plug is pulled out of an appliance; it just goes out,” she says.
Fibromyalgia: a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Struggles · 23
changed your view of yourself Acceptance Comes in Waves
It can be unbelievable, for sure. How can this be happening to me? I’ve been healthy all my life. For many people, this is what they think to themselves when they are diagnosed with an invisible illness. The days, months and years to come are filled with moments of low times where you are almost hating yourself for not being healthy, even though it is probably not your fault. These days are coupled with the good days, which come later and more frequently, thank goodness. With the help of medicine, support, and acceptance within yourself, it usually becomes easier to live with and accept. When someone says to you,“Just get over it, and don’t think about it!” it becomes even harder to deal with. This is damaging as well because you may suppress your illness and not want to deal with it in a healthy way, which makes acceptance seem further away than it actually is.
A few people I know feel this way. Katelyn K. says that when she was younger, she hated herself for having Crohn’s disease. Crohn’s is very similar to ulcerative colitis, and always having to worry about having a flare or being near a bathroom is something people really shouldn’t have
to think about. It can be embarrassing if you have an accident in public, which can create changes in how much you leave your house, how long you can be without access to a bathroom, and just the overall view you have of yourself. Speaking of feeling low about herself, Emily S. used to hate herself from being bullied frequently. Middle school is hard already and being made fun of for something you cannot control is going to really affect your self-esteem.“Once I knew what was going on inside of me, I could build my self-esteem back up,” she says. She also took relief in knowing that she could explain to bullies what was happening to her. However, even though she was gaining some confidence again, she learned that by having PCOS, there is a slim chance of carrying a baby full term because of the irregularity and unpredictability of her reproductive system. This saddens her daily, but she has gained a new appreciation for adopting or being a mother to someone else’s kids, which she is actually doing now. She is happy that she can be a mother even though she may not be able to have her own.
an inflammatory bowel disease that causes inflammation in the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.
Borderline Personality Disorder (BPD):
a condition characterized by difficulties in regulating emotion. This difficulty leads to severe, unstable mood swings, impulsivity and instability, poor self-image and stormy personal relationships.
Amanda S. has Borderline Personality Disorder and her brain changes the way she perceives people. Her emotions are like a roller-coaster and during manic moments, she can act on them suddenly and abruptly. Her grandma went so far as to tell her that she would never find someone because of how much she fluctuates both emotionally and personally. Before Amanda knew what was happening in her brain, she thought she was going crazy. She may have felt like she could not tell anyone, because in this world, it is frequently frowned upon to talk about invisible illnesses and people tend to keep it to themselves. “Adding a name to the problem helped me. It made me feel like I had a better chance,”she says. She realized that her illness doesn’t make up her whole character and that she is worth so much more. Some people may feel like they’re not good enough due to what they can’t do that they used to. For my mom, she has a hard time on a daily basis accepting her disability for what it is and blaming herself for it. She says that when you’re thrown in a situation that you can’t control, life kind of goes out of control, especially when you
26 · Changes
can’t do anything about it. Before she was diagnosed with MS, she was making a very decent living, and like mentioned earlier, it is increasingly hard for her to get a job now. Being self-sufficient for so long and then having that ripped away from you is really damaging to your confidence in your abilities. She says,“In our society, money and status define who you are.” If this is true, then people with invisible disabilities or illnesses will be seen as incapable as a person, which is not true. On the other side of the coin, some people told me how strong they feel now after realizing how much they can overcome. Once faced with all of these challenges and hardships, it can help someone become more confident and know that he or she can handle more than they thought.“I used to feel worthless and like a complete waste of space,” Savannah P. says. The reason she felt this way was because her mood swings and anxiety would come out of nowhere and she felt like she couldn’t control anything. It was a downhill battle until she found the right medication and what was healthy for her in terms of stress and therapy sessions. Today, she realizes how strong
Thoughts from Mary O.: “It makes me angry and sad and like some days I feel like nothing like that song... ‘save me from the nothing I have become.’ I know it is not true but when you are thrown into a situation you cannot control, your life becomes out of control especially if you cannot do much about it. In our society, money and status defines who you are in all reality it seems if you do not have a lot of money or a high status you are nonexistent.”
she truly is. I think this is so important to take away from all of this. Katelyn C. feels similarly to Savannah; she says, “I view myself as more powerful than I ever have.” With her seizure disorder, her brain is attacking her body constantly but she is able to overcome it and figure out ways to deal with it and cope. She feels that she has now turned it into something successful because she counsels people who have similar issues as her. It’s so important to educate other people about these things, and by actually having an invisible illness, it’s a way to help other people and yourself at the same time.
Changes · 27
Postural Orthostatic Tachycardia Syndrome (POTS):
one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position.
28 · Changes
Tori B. fights with herself daily about how sick she can be on a regular basis. She often views herself as not being sick enough, which then delegitimizes her symptoms. She feels that she should be able to do certain things like a ‘normal’ person and when she can’t, she feels like she’s not good enough. Especially when she can’t keep up or do the things she wants to, like going for a walk or wearing heels, she feels defeated. Tori struggles with POTS, or postural orthostatic tachycardia syndrome. She has a hard time with standing for a long period of time and concentrating. After she was diagnosed with POTS, she was suddenly faced this weird double standard. She was simultaneously too young to be sick, but not sick enough to be labeled disabled or chronically ill. This is most likely due to the symptoms of the illness. When you say you’re dizzy or need to sit down, people might think that you’re just tired or have been on your feet to long, but for Tori, and millions of other people who have POTS, it’s actually a physical problem. Experiencing this double standard caused Tori to believe that her illness wasn’t enough to even prove to herself that she was sick. This is what I am trying to make
people understand with this book; people who have an invisible illness shouldn’t have to prove to someone else that their illness is legitimate or valid, let alone to themselves. Tori B. says: “I’m sick, but not enough to warrant an excuse or permission to behave the way that I do. Because of that I feel like I’m living a half-life; I’m not fully healthy and I’m not fully ‘sick.’”
Personally for me, I felt really scared and angry when I was first diagnosed with ulcerative colitis. Initially I was mad because I would be missing school, which I understand now was silly. I was diagnosed in the summer of 2015, so my illness is still fairly new to me. I think how I view myself hasn’t changed too much, but I just have to remember certain things and take precaution that I didn’t need to do before. For example, I have to remember to eat slower or I might wake up the next morning with a terribly upset stomach and a headache. Also, when I am going out somewhere, I need to think in my head when I need to take my pills and whether I need to bring them with me or not. Just getting used to telling myself these things is proving to myself that I’m growing, and that’s all I can ask for.
About 40-80% of new parents have postpartum depression, but no matter what, the fear and shame usually will stop people from looking for help. Feeling this way about your new baby is confusing and heartbreaking, so it is imperative to get help for yourself and for the loved ones around you. She says: “When I went out in public, I had to put on my happy face when I was constantly struggling not to cry.”
Postpartum Depression: a
type of clinical depression which can affect both sexes after childbirth. Symptoms may include sadness, low energy, changes in sleeping and eating patterns, reduced desire for sex, crying episodes, anxiety, and irritability.
Rachel M. wished she could feel happier and like more of the mother she should be when she had her baby. She suffers from postpartum depression and just didn’t understand why she was feeling tired and depressed. She struggled with loving and connecting with her baby like society expected her to, but she just couldn’t. Changes · 31
coping with an invisible illness This is another extremely important aspect of living with an invisible illness. Coping comes in many different forms and at different levels. It can also be healthy or unhealthy, and although everyone is entitled to their own way to cope, hopefully the healthy habits will outweigh the unhealthy. Maybe those who are not coping in the best way can find better ways to handle what they’re going through. I wanted to include this section in case someone out there needs some coping inspiration and wants to get inspired by other people. That being said, I am in no way condoning unhealthy habits, but by all means, if this section helps just one person, then it was worth it. Dealing with fibromyalgia, Kayla C. says that she sleeps a lot because she can’t function too well awake. Also, she occasionally takes pills and warm baths. Taking a warm bath can help soothe the pain that she is feeling in her body all the time. On an unhealthy note, she also emotionally eats, which can get out of hand and not necessarily help the situation. Personally for me, I relate to the warm water idea. I love taking showers when I’m not feeling too well. The hot water soothes any pain I am feeling and also helps to just clear my mind and calm me down. Rachel M. tells me that she
copes by taking prescription medicine to keep her depression as controlled as possible, and that soon she is going to start therapy to talk about her experience with having postpartum and her trigger. Hopefully she will learn how to process them better. Sometimes just talking to someone about how you are feeling can be the way to cope. Getting feelings out and things off your chest can be so helpful.
Speaking of talking to people to cope, my mom says that the time spent with friends and family is one way that she copes. It takes her mind off of the struggles in her everyday life and she can hear about how other people are doing instead. She enjoys staying motivated as well, doing things for others, and cooking. Usually she will cook a big meal, even if she is the only one eating. Then she will make plates up for other people in the building she lives in and give the food away. This is her way of giving that makes her feel like she is making a difference in someone’s day. She says,“Doing things for others makes me feel better about myself and is therapy in a way. She also enjoys getting massages when her muscles are sore to help loosen up the tightness that comes with multiple sclerosis. Some additional things that she will do are pray and take anti33
depressants. She also has depression, which came soon after being diagnosed with MS. Lastly, my mom will bounce her health concerns off her doctors to see what they think which takes some pressure off of her shoulders. Amanda S., to cope with borderline personality disorder and Pica, says that she smokes to cope but she is really trying to stop. Also, she used to self-harm, but really did not want to do that anymore so she got a tattoo instead to train herself not to do it. Eventually, Amanda wants to be able to depend on her drawings and writing in order to cope. She says,“That’s what I see for my future.” I think it is really amazing that she has a goal like that to follow. Even though her coping habit is unhealthy now, she sees a better future for that part of herself than what she is doing now. Also, she used to be really bothered by what her family thought of her and how she handled her emotions, but now she has finally accepted them for who they are. They support her as much as they can, and sometimes, people will just never fully understand. A way to cope is definitely to accept that fact and try to move on and come to terms with it. Katelyn K. sometimes ignores her illness half the time and tries to ignore the pain. This isn’t really healthy at all because there could be something very 34 · Coping
Katelyn K. says: “Oh geez hmm. Honestly half the time I ignore it. I pretend like I don’t have it. Cuz it’s less stress for me and less stress for others. Or I just ignore the pain and act like I’m perfectly fine when I’m actually hardcore feeling like I’m dying.”
wrong happening there. Either she is having a flare, which in the worst cases require antibiotics, or the medication she is taking isn’t up to par. In any case, those things shouldn’t be ignored. With ulcerative colitis, which is very similar to Crohn’s, I try to just stay as stress-free as possible. This is so hard to do while in college, but if I feel I am getting overwhelmed, I just take a few seconds to breathe and relax. Stress gives my illness the opportunity to become way worse. Sometimes coping can involve just learning how to live every day through your illness. Darian H. says that she tries to understand her mistakes and learn from them. She has trouble when talking to people. Sometimes she says too much and sometimes nothing at all, so learning how to act in certain situations is crucial to her. She applies what she has learned to future situations to be able to feel more confident when she has to have a conversation with someone. Katelyn C. copes with her stress seizures by, similar to Darian, she realizes that things are about to get stressful or hard and she knows what to do. She will try to distract herself from what is bothering her like doing a craft or going for a walk or hike, even if it is just for five minutes. She says:“If I can’t find an escape, I completely shut down. I can’t talk to
people and I can’t hear when someone is talking to me.” Also, she has learned the difference between just being tired and when she is actually about to have a seizure. Because of this knowledge, she can have time to lay down or be in a safe space. Just this assurance in her own ability to know the difference is a way to cope. Sometimes indulging in things that you love is a great way to cope. Savannah P. writes poetry and listens to music. I feel like I can definitely relate with her on that. I feel that music is a great way to lose yourself and find messages that really relate to the way that you are feeling. Also, similar to Amanda S., expressing yourself can be cathartic in so many ways. By writing poetry, you can get those experiences and emotions out in a healthy and constructive way. Savannah says that she also likes to shower to cope. However, when things get bad, sometimes she will go to unhealthy coping and become destructive. With her sleeping pattern, she will unintentionally mess it up, which can really throw her off. She will stay up late and function on little sleep. Because of this, she’ll drink a lot of caffeine to stay up longer which can make her sick. She says that she may drink more alcohol than she would normally to try and forget or just feel better about her situation but then Coping · 37
wake up with a terrible hangover, feeling worse than she did the night before. The whole thing becomes a bad cycle. This is the reality of living and dealing with an invisible illness though. You have to find the best and healthiest ways to cope, but the bad ones will no doubt wiggle their way into your life. Spreading the word about your invisible illness, or just in general, educating people about them, can be a way to cope. Emily S. finds that telling people about her experiences and the truths behind her illness helps a lot. I feel the same way; it puts a little more hope in my heart when people learn about these things and realize the truth behind what people are going through. No matter how you cope, it is flexible. Coping is not fixed or static. It can change, move, evolve, and something you did a year ago to deal may seem trivial and unhealthy to you now. Having an invisible illness is such a dynamic force; things change and nothing stays the same for long, which is why it is so unpredictable.
38 · Coping
Tori B. on coping: “I think the most recurring way I cope with my invisible illnesses is rest. Isolating myself and lying in bed, sleeping, and avoiding all responsibilities helps me recharge myself. In these cases, I’m not sleeping because I’m tired. It’s more like I’m sleeping because I do not want to be awake. Being awake means being in pain or somehow being reminded of being sick. The more mental/emotional coping mechanisms for having an invisible illness are a bit different though. While physically recharging helps me recharge emotionally, sometimes it isn’t enough. Now that I’m 21, I’m finding that I have a glass of wine more often than I should to relax and get my mind off of things.”
helping others understand For the final part of this book, I would like to sort of sum up everything that was said in previous pages. This is perhaps the most important part of this whole thing; to give advice and a little insight on what can be done. What I mean is what can we do to change the way things are right now? How can we change the way invisible illnesses are perceived and how people who have them are treated? This is such a touchy and hard thing to consider and try to make happen. We as humans are judgmental by nature. We always tend to put things and people into categories without even realizing that we are doing it. It is just the way our brains are hardwired. This is why stereotypes are such a problem and
so hard to look past. â€œStereotypes are hard to break, because most are formed without a full understanding of whatâ€™s actually going on,â€?Amanda S. says. What we can do is try to be a little more compassionate and sympathetic when we see someone who may not look like they are ill but are using the elevator or acting somewhat different from the norm. According to the statistics, 133 million people living in the U.S. have an invisible illness. That is 10% of the population. How can we change things so that the 10% feel just as worthy and validated as the other 90%?
Be in Someone’s Shoes Many invisible illnesses have symptoms that people feel on a daily basis that are really unique and are hard to explain. Sometimes the only way for someone to know how you feel is to experience it for themselves. This is Savannah P. says: how my mom thinks that people can somewhat under“While there are certain stereotypes people fit, others need to stand what she goes through every day. She feels that people should live with the illness by copying the symp- realize that not everybody falls into one of those categories; not everything is as it appears to be.” toms. For multiple sclerosis, this might include walking around with dry macaroni in your shoes all day or wearing sunglasses with Vaseline smeared over them. These seem like silly ways to get the point across, but people have actually done experiments like this in the past. The macaroni is similar to the pain she feels while being on her feet for hours on end. The glasses with Vaseline represent how her vision can be really clear one day and then the next day, be really fuzzy and foggy. It is really scary for her when that happens. My mom feels that this is a good way to help people understand where she is coming from. Kayla C. feels similarly to my mom. She says,“I think the only way others will understand the severity is to hear stories from real people or a description of what the pain feels like.” I feel that what she said is basically the whole point of this book. Getting honest responses and opinions is one of the best ways to change the situation. 42 · Helping
How You Can Act Most often the way that people can change the tide with how people with invisible illnesses are treated is just how they treat them and act. Amanda S. says: “Simply be the best person you can be.” I couldn’t agree more. If you think objectively and open-minded about what you are seeing, then you won’t be judgmental and the person with the invisible illness won’t seem ostracized or even more awful about what they are going through. Amanda also says that you never know what is going on with someone when you see them. They could be facing demons that you know nothing about.“Just treat people how you would want to be treated,” she says. A message to live by from when we were five really does resonate through this situation now. I try to do this in my own life. I find myself making assumptions and being judgmental myself but I will try to change my outlook and not let stereotypes and preconceived thoughts cloud my view on a person. This is really hard to do for some people but it’s really imperative right now. Even when people has invisible illnesses, they are still expected to follow norms and behaviors as people who do not have them. They look normal on the outside so why can’t they perform like everyone else? This is such a damaging concept and the sooner everyone can un44 · Helping
derstand that they are called “invisible illnesses” for a reason, the better. Darian H. says,“I feel that a lot of pressure would be relieved from me and people like me if we weren’t expected to behave neurotypically.” Neurotypical refers to individuals who assume that their experience of the world is either the only one or the only correct one. She wishes that people wouldn’t treat her like she should act the way that they do and then be prejudiced when she doesn’t. Savannah P. says that the most important thing we can do is to listen and not assume. Jumping to conclusions is the worst thing we can do in situations such as these and it doesn’t help anyone. She also is frustrated that people are still seeing an invisible illness as an excuse. If you are acting in a certain way due to the side-effects of your illness, someone may say that you are just using it as an excuse to explain why you behaved in that way. People need to realize that an invisible illness is not an excuse; it is the literal reason for what is happening.
Education is Key
Katelyn C. feels: “As far as helping people understand I think it’s just about bringing awareness to different disorders that people have and personally I don’t think anything will change until the people with the invisible illnesses start to talk about it. If we are scared of people putting us down or treating us different so we change ourselves or hide who we are then we are no better than them and can’t expect change. We need to be the people who make the change.”
In the end, this is the golden ticket. This is the main mission that we all need to partake in to help erase the stigma, stereotypes, and help people have some more compassion. When I was conducting my interviews, I said: “the last question is how you feel we can help others understand or be more compassionate and less stereotypical about people who have invisible illnesses.” I was pleasantly surprised to read that almost every person, as part of their response, said “to educate.” Kayla C. says that doctors should speak out more about invisible illnesses. I feel that this is a really good point. People will listen to doctors because they are credible and very knowledgeable. Doctors are some people’s main source of information pertaining to health. Hearing actual facts from a doctor might inform people more. Emily S. wishes that health classes in school would teach students the truth about invisible illnesses. I think that they do to an extent. I remember learning about depression and mental illnesses, but not to the extent that it should be taught. Doctors and health class aside, perhaps the main people who should be teaching and telling these stories are the people who actually have the invisible illnesses. So many people feel like they cannot speak up about Helping · 45
what they are going through because they are either embarrassed or afraid that they will not be taken seriously, but we need to speak up. It’s this crazy circle that keeps going around and around. People are afraid to Tori B. on education: speak up which keeps perpetuating harmful stereotypes, which causes people to discriminate against people, “Often times, disability makes people uncomfortable. Talking about it and being honest and factual makes it easier for which causes the people from the beginning to not want other people to talk about it. I think leading by example and to speak up. If something does not change, where will telling our stories is how we get people to be compassionate.” that leave us? It will leave us feeling invalidated and keep this weird phenomena going where if you look fine on the outside, then you don’t need to ride the elevator. Tori B. agrees with this. She also believes in giving people education that will be easy to interpret and access. If the information is part of a two-hundred-page book or online thesis with a ton of medical terms, no one is going to want to read it. By making the information relatable, short, but also accurate and impactful, it can really make a difference.
Helping · 47
Thank you. It means a lot to have someone willing to shed light on it. –Emily S. Thank you so much for this opportunity and that little line of hope. –Amanda S. Thanks for providing me with some kind of outlet. It’ll probably be good for me to share. –Rachel M.
last word Thank you for reading. Thank you for trying to understand and for listening to these stories. The point of all of this is that you will take something from this book. Whether it’s one of the pull quotes that struck you, a definition you never knew, or a statistic, share it with someone. Put it out there to let other people know what you have learned. It is important to try and erase the stigma around invisible illnesses. It is okay to talk about them. It is okay to ask for help if you feel something is not right in your mind or body. It is okay to look fine on the surface but feel exhausted, pained, or panicked
on the inside. Unfortunately you may be met with doubters at first. It is hard for people to believe what they cannot see, which is sad. However, what’s important to try and do is feel something other than judgement when you can’t see something. Don’t doubt someone’s feelings or thoughts. Take a step back and ask yourself: How would I like to be treated in this situation? Then treat someone else that way. Be compassionate, openminded, and free of judgement. That is what we need in this world.
glossary Terms in order of appearance: Invisible Illness: described as an illness that is not immediately apparent. Many people with one are suspected of faking or imagining their symptoms. Ulcerative Colitis: an inflammatory bowel disease that causes long-lasting inflammation and ulcers (sores) in the digestive tract. It is classified as an autoimmune disease where the immune system attacks its bodyâ€™s own cells. Multiple Sclerosis: a nervous system disease that affects your brain and spinal cord. It damages the myelin sheath, the material that surrounds and protects your nerve cells. This damage slows down or blocks messages between your brain and your body. Polycystic Ovarian Syndrome (PCOS): a condition in which a womanâ€™s levels of the sex hormones estrogen and progesterone are out of balance. This leads to the growth of ovarian cysts. PCOS can cause problems with a womenâ€™s menstrual cycle, fertility, cardiac function, and appearance. Nonepileptic Seizures: a disorder that mimics seizurelike activity. It is characterized by a loss or change in physical function and is usually caused by emotional conflicts of stress.
Autism: High-Functioning: a condition in which the person has relatively mild symptoms which, despite their mildness, are significant enough to merit an autism spectrum diagnosis. Bipolar Type 2: characterized by at least one episode of major depression and at least one episode of hypomania, which is marked by elation and hyperactivity. Diagnosis for bipolar II disorder requires that the individual must never have experienced a full manic episode. Severe Panic Disorder: diagnosed in people who experience spontaneous seemingly out-of-the-blue panic attacks and are preoccupied with the fear of a recurring attack. Panic attacks occur unexpectedly, sometimes even during sleep. Pica: an eating disorder typically defined as the persistent ingestion of nonnutritive substances for at least 1 month at an age for which this behavior is developmentally inappropriate. Fibromyalgia: a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. 51
Crohnâ€™s Disease: an inflammatory bowel disease that causes inflammation in the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.
Borderline Personality Disorder (BPD): a condition characterized by difficulties in regulating emotion. This difficulty leads to severe, unstable mood swings, impulsivity and instability, poor self-image and stormy personal relationships.
Postural Orthostatic Tachycardia Syndrome (POTS): one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. Postpartum Depression: a type of clinical depression which can affect both sexes after childbirth. Symptoms may include sadness, low energy, changes in sleeping and eating patterns, reduced desire for sex, crying episodes, anxiety, and irritability.
52 Âˇ Glossary
but wait, There’s more. This page lists more invisible illnesses for you to take in. I wanted to list these here in order to convey the immensity of this topic. By looking at all of these, I want you to take even a few away with you. If you hear one or two of them in conversation later in your life, or someone you know may have one, I want you to remember this book. Remember the struggles you read, the stigma and bullying, and the real experiences from real people. *This is only a fraction.
Chronic Fatigue Syndrome
Circadian Rhythm Sleep Disorder
Coeliac Disease Cystic Fibrosis
Multiple Chemical Sensitivity
Post-Traumatic Stress Disorder
Reflex Sympathetic Dystrophy
Hereditary Fructose Intolerance
Temporomandibular Joint Disorder
Traumatic Brain Injury Glossary · 53
All I want to be is alive. -Savannah P.
Read this book. Read it if you are struggling and need some honest words. Read it if you have an invisible illness and the world is coming down around you. However, read it if itâ€™s not and you are doing well amidst all of the adversity. Read it if you want to know more about invisible illnesses. Read it if you want to help your friends and family. But above all, read it if you are human.