A Q&A With The Women Behind Suffering The Silence
With chronic health issues being discussed more in the media lately, now more than ever, we’re seeing that women are finding their voice to speak up about their well-being, publicly. As part of our monthly series at Femsplain, which highlights lady “do-ers” who are making/doing amazing things, we chatted with Erica Lupinacci and Allie Cashel, the ladies behind Suffering the Silence — a community for people living with chronic illnesses — to talk living with disease, what they’re achieving with the blog, and how embarrassing moments played a part in their lives.
As co-founders of Suffering the Silence, what’s the inspiration behind it and the background on how it came to be?
Erica: Allie was diagnosed (Chronic Lyme disease) way before I was diagnosed with Lupus. She’s been sick since she was seven. We became friends in middle school, and I was aware of her illness but I didn’t understand it very much and we didn’t talk about it too much. It took us a while to really connect on it. It took me three years to get diagnosed but afterwards, it took us a while to connect about it. It took Allie getting the book deal and her publicist bringing me on for us to work together. Illness is uncomfortable to talk about for a lot of people, and once we started talking about it, it became easier over time.
Allie: The idea for the blog features the structure behind the book. The thing most powerful to me during the research was how much people were empowered by telling their own stories in their own voices. On the blog, we try to edit in a limited way, basically proofread without censoring or editing too much.
What’s your favorite part about running the community?
Erica: What’s cool is for a lot of people, it’s the first time they’re putting their feelings about the illness down. The first time I sat down and wrote what I went through, I was really nervous to post it on Facebook and being open about my experience. I had so much amazing feedback from people that I hadn’t talked to in years, and many of them were thanking me for doing this and wanting to be involved.
Allie: We hope ultimately our readership will be much bigger. Where we are right now, the platform helps readers connect with their own communities. A lot of times the biggest readers are ones who know these writers. With a platform and audience, everybody can be their own writer and advocate.
Since launching, Femsplain has published numerous health pieces by women. What can women living with chronic illness expect to find on Suffering the Silence?
Allie: For women who are looking to talk about their experiences, I talk about it in the book. With chronic disease, it has such a big effect on women because their experiences are so tied with it. Hopefully people can find how being a woman plays a big role in the patient’s day-to-day. One interesting aspect is that in the book, a lot of women make it clear that this wouldn’t be happening to them if they were men.
Erica: For women, we have a lot of symptoms that aren’t taken seriously and we’re called dramatic. I’m always treated like I don’t know anything about my symptoms. With Lyme, there are so many neurological issues that are unexplained, which complicates it even more.
Allie, tell us a bit about your upcoming book “Suffering the Silence: Chronic Lyme Disease in an Age of Denial”.
The book tells my own experience about Lyme and Chronic Lyme and manages to fit 17 years of illness in. I was on constant treatment but I never really experienced the pushback of living with Lyme disease. It also tells the experience of switching doctors and the neurological effects of living with this and how the best doctors tell you there’s nothing physically wrong with you. It features interviews with patients from all over the world. Something a lot of people are excited about and i’m nervous about are the interviews with scientists and doctors who give their opinions on the disease.
This month’s theme on Femsplain is “Embarrassing Moments.” Looking back on growing up with chronic illness, do you have any embarrassing memories you’d like to share?
Allie: When I was in 10th grade — the height of adolescence when everything is embarrassing — I had a tube (PICC) sticking out of my arm that told everyone everything was wrong with me. My sibling went to a private school, and one day we walked in and there’s a kindergarten class and one of the kids points and yells, “What’s that?!”
Erica: When I first got sick and was in the hospital, I was treated with three big doses of steroids. As a side effect, I gained about 30 pounds in a month. When you gain weight via steroids, it’s a very odd kind of weight. At the time i didn’t really get it or understand how different I looked. The year after graduating, I came back to see my high school musical, and one of my friend’s moms came up to me and was like, “Look at you, you look so normal! At prom I was worried about you.” Which was before I’d lost the weight. Not the greatest thing to hear as a teenager.
To learn more, visit Sufferingthesilence.org
