From the time they met in seventh grade through the end of high school, Allie Cashel and Erica Lupinacci shared everything like sisters. So it’s hard to imagine that throughout all of it they were both suffering silently through the pain of different chronic illnesses, never speaking a word about their issues to each other. Now both out of college, the two are making up for lost time and making some serious noise about chronic disease through an awareness campaign they call Suffering The Silence.
Sadly, Allie, who was diagnosed with Lyme disease at age 7, then with three other tick-borne diseases – babesiosis, ehrlichiosis, and bartonellosis – at age 14, and Erica, who was diagnosed with Arthritis and Fibromyalgia as a sophomore in high school and then with Lupus as a senior, only learned to talk to each other about their respective illnesses after they reconnected post-college. But it was through those long overdue conversations that they realized what a gift that kind of a support could be.
“The simple act of listening and sharing illness narratives has been an incredibly powerful and healing force in our lives…”
It’s what eventually inspired them to launch Suffering The Silence, an online community where together they are working tirelessly to encourage other people living with chronic illnesses to break their silence. It’s designed to be a space for patients, friends, and family to share and witness the true living experience of chronic disease. As they say, “Too often patients of these illnesses feel silenced and dismissed.”
Here are some of the inspiring portraits and personal stories that have already been shared.
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. -Tatianna
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
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. -Vivian
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