Suffering the Silence:
Portraits of Chronic Illness
The stigma surrounding chronic illness can leave people feeling misunderstood, alone, dismissed, and silenced. When someone doesn’t look visibly sick, one can often forget what their life is like behind the scenes. Eleven New Yorkers spoke out about life with chronic illness, breaking their silence and painting a living portrait of what it is like to live with chronic disease. We will no longer suffer in silence.
Every day I’m trying to learn how to love a body I can’t control. The unpredictability can be the most painful aspect of this disease. I get scared that my body will keep me from living the life I envision but I’ve also decided I won’t let that fear hold me back. I’m incredibly passionate about my life and am dedicated to making my very big dreams come true. Fighting Lupus has helped me truly understand the extraordinary power of believing in yourself.
–Erica, Systemic Lupus Erythematosus
For a long time I was terrified to tell people about my illness experience because I was scared they wouldn’t believe me. I needed to become an advocate for myself, especially in conversations about my controversial diagnosis. I had doctors tell me I was having a mental breakdown and needed to find the strength to tell them otherwise. It hasn’t been easy, but finding my voice and sharing my story has been an incredibly powerful tool in my healing process.
–Allie, Chronic Lyme Disease
There is such a stigma around HIV, people automatically disable you and don’t think that you can do anything else. Just because I have something like this doesn’t mean that I still can’t go out and sing and do the things that I am meant to do. It doesn’t mean that I can’t date, that I can’t love, it doesn’t mean that I can’t do any of those things. I’m still a person, I’m still human.
–Ty, HIV Positive
Something simple like breathing is a hard thing for people living with asthma. So if your goal is “today I want to breathe,” that is a big feat because even walking down the stairs, the subways in New York, the pollen, smog, everything gets in the way of breathing. I heard this quote before that said “a life as an asthmatic is like a fish with no water” and it’s very, very true.
My family and friends sometimes forget that I have it, they’ll forget that I wake up every morning with my back hurting. It doesn’t register in their heads. It’s not their fault, I dont complain constantly about it so its easier to forget I have it. I also work as a waitress so a lot of times I’m viewed as weak because I choose not to carry heavy trays. I physically can’t and I have to remind people. I think in their heads they think I’m lazy or making it up. If I could choose to be stronger, I would love to be stronger.
Since developing Crohn’s Disease, I’ve had to scale back a few goals of mine. For example, I can’t join the military and I can’t tour as a musician because I can’t get a cold place to store my medicine. It’s a humbling experience.
–Evan, Crohn’s Disease
The biggest thing, especially with Endometriosis, is that so many women go undiagnosed for so long because they’ve never heard of it. The problem I had with my doctor was that I would go in complaining of pain and he said “Everyone goes through this, it’s called a period.” It took me a good six years before I finally got diagnosed. Although on the outside it may look like every now and then I get period pains, you don’t realize that no, it’s an every day thing and just because I don’t want everyone to know I’m in pain-I am.
A lot of my friends didn’t know about it. I didn’t want to burden them. I was afraid if I said anything, it would come across as “pity me” but at the same time I kind of wanted to tell people to be like “hey, this is what’s going on, just so you know” if I have to leave class or something. So it’s that weird balance of figuring how much do you tell, how much do you disclose.
–Ryan, Ulcerative Colitis
You learn who your friends are. I went to arthritis camp when I was a kid. Telling my friends I went to arthritis camp, they would giggle and I would say, no, I’m serious. There are a lot of issues that don’t get acknowledged in the disability community. There’s a lack of intersectionality shown on foundation websites and it was kind of depressing to the point that I can’t say I became a militant activist but I became angry enough to be more vocal about it.
–Chiara, Rheumatoid Arthritis, Fibromyalgia, Scoliosis
It’s not only important to educate yourself, you have to educate your significant other, your friends and your family. Sharing with my friends and my family, not only about my condition but also the educational part of being a diabetic has really helped me along in my journey to be accountable not only for myself but everyone around me.
–Christian, Type 2 Diabetes
90% of people with Hemophilia contracted HIV and/or Hepatitis-C in the late 80s, early 90s because of the Blood Contamination Crisis that is one of the most unfortunate events in American health history. On the converse, today we have the medicine to live very normal lives. I’m a part of the first fully healthy generation of people with hemophilia and yet 80% of the world still doesn’t have access to the medicine or care that we do, that allows someone like me to live to see beyond the age of 3 or 4. The history is dark and the people who lived through it still feel the effects of that. It’s a very conflicted community. It’s strange to look and feel normal but be a part of something that is very specifically complicated.