Illness can be hard to talk about, especially in the public eye where young people may feel like they are being judged. One woman, however, is setting out to change this by starting an online community, Suffering the Silence, where people who are living with chronic illnesses share their narratives and communicate openly with one another about their struggles.
The idea stemmed from Allie Cashel and fellow friend Erica Lupinacci. Allie, who has struggled with Lyme disease since she was 7, a topic she chose to write about for her college thesis now turned book, wanted to create a discussion among chronic-illness sufferers. Likewise, Erica, who was diagnosed with lupus at 18, wanted to participate in the honest and open dialogue about chronic illnesses.
Both women state on their site, "The simple act of listening and sharing illness narratives has been an incredibly powerful and healing force in both of our lives, and we hope to use this space to continue to honestly and openly communicate those stories."
Chronic-illness sufferers have embraced this online community, often sharing their stories through the portrait series, where people are photographed with the names of their "invisible illnesses and diseases" written on their arms. Along with the photos are moving captions that describe their daily lives living with said condition. The dialogue has even prompted an outpour of social media users sharing their stories by using the hashtag #SufferingTheSilence.
While Allie's book isn't out until September, the movement she created has received a huge online response and inspired many to speak up. Read on to see some of the powerful stories, and as Allie writes on her site, "It's time to make some noise."
The day I was diagnosed with Narcolepsy/Cataplexy I'm not going to lie, I was embarrassed and scared because I felt my life would never be normal anymore, and I didn't know how to deal with it. I wasn't sure how my family or my friends would react; to be honest some still don't know I'm ill until this post. I was afraid of the vulnerability that comes with this illness, it can be taken as funny, or a pity party could ensue, and I never wanted anyone to see me that way. Then there was the fact Narcolepsy isn't commonly heard of; no one believes you and automatically thinks you're just lazy. I don't go out with friends as much or visit family because I'm sleepy a lot, and I see how that offends them but it's not something I can control. I don't ever want to be a burden nor do I want to not be able to laugh at something because then cataplexy kicks in. It's difficult to manage, I'm still learning, we're still trying to find the right meds that work for me so I still have a long way to go. This has been very humbling; I've lost a lot of my independence and it's not my strong suit to ask for help but I'm slowly getting there. The most difficult of all of this though, has been loving myself as I am now, finding some strength where there is none, and remembering that I CAN still follow my dreams and though it may be difficult and it may take longer, I WILL get there. I've finally decided to be vocal about this, and I already feel a freedom, and strength that I hadn't felt before. So thank you for listening. @sufferingthesilence
I was diagnosed with lupus and rheumatoid arthritis at the age of 22. Despite illness, I have received two Master's degrees and a PhD. But the best lessons have come from outside the classroom and have come from navigating life living with multiple chronic illnesses. (I used red lipstick to write on my arm because I wanted to say what would be coming from my lips. I also like to think that red lipstick makes you brave and fearless) @sufferingthesilence @ericaloops #sufferingthesilence
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 #sufferingthesilence JOIN THE MOVEMENT
There is such a stigma around #HIV, people automatically disable you and don't think 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 #sufferingthesilence JOIN THE MOVEMENT
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 don't complain constantly about it so it's 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 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. -Vivian #sufferingthesilence JOIN THE MOVEMENT
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 #NewYork, 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. -Reisha #sufferingthesilence JOIN THE MOVEMENT, click link in bio
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 had helped me truly understand the extraordinary power of believing in yourself. -@ericaloops #lupus #lupusawareness #spoonies #chronicillness #chroniclife #sufferingthesilence JOIN THE MOVEMENT
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. -@tatystweets #sufferingthesilence
Ninety percent of people with #hemophilia contracted #HIV and/or Hep-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 - @patrickjameslynch #sufferingthesilence