SHIRA STRONGIN has known “something was off” since she was a child. When she suffered a severe back injury right before her 10th birthday, it became clear that her health was a serious issue. She has had numerous incorrect diagnoses, major surgeries and hospital stays. In fact, Shira and her family are still looking for definitive answers about her strange and debilitating symptoms.
But that hasn’t stopped Shira Strongin from living.
A few years ago, Shira founded Sick Chicks, a community of young women who are each facing illness or disabilities. What started as Shira’s efforts to write down her thoughts during her own struggle has turned into a national empowerment movement. Shira has developed a Spotlight Program through her blog to help women become published writers.
She has also launched an Ambassador program–teaching young women about fundraising, community building, and the legislative advocacy process. Next, Shira is working on creating a College Scholarship for Sick Chicks. Her network of incredibly brave women continues to grow, and get stronger.
Shira is a 2017 recipients of the Diller Teen Tikkun Olam Awards for brave, compassionate work.
We talked with Shira just after she started her first year of college–a milestone she once thought she’d never reach.
Talking with Shira Strongin
What’s your favorite song?
Honestly, my favorite song changes by the minute, but right now I’d have to say it’s “Young” by Frankie Cosmos.
Your favorite book?
I love this question! It’d have to be Me and Earl and the Dying Girl. I know–a bit ironic, but it’s the only book that portrays illness/dying properly without a Savior Syndrome complex and it was the first time I could actually see myself in a character, which was huge!
Your favorite thing to do with a free afternoon?
I love to blast music as loud as I want and write: sometimes blogs, sometimes news articles, sometimes poetry or short stories, but overall writing is just so cathartic.
What’s an average day like in your life?
Unfortunately, because of the unpredictability of my disease, every day is different and there’s no such thing as an “average day.” Each presents new challenges and potential complications. I like to think it’s comparable to living with the twists in the Big Brother house (if you don’t watch that show, you’re missing out). You never know if a twist will be great or have dangerous consequences, but that’s all part of the fun.
If you could have one superpower, what would it be?
I would love to be able to teleport so I could pop home and visit my dogs whenever I want without having to take a cross-country flight.
Where are you in school now, and what are you studying?
I actually just began my freshman year at George Washington University and am studying Political Communications.
How did you decide to start writing about your experiences and publishing a blog?
I had always been involved with the arts growing up, and when those things were taken from me because of my health, or rather lack of, it only seemed natural to turn to another avenue to remain creative through writing. When I became sick, it was before the days of social media, so I was extremely isolated and my blog allowed me to get out my experiences and connect with others. Unfortunately, I was so ashamed about being a “sick chick” that I wrote under a pen name for many years.
What were some of the first reactions you got to your words online?
I’m very lucky to be able to say that all of my initial reactions were nothing but positive. Again, I had started doing this before social media had become popular, so people who were isolated found comfort in finding someone voicing what some might say were abnormal and serious medical experiences as if they were normal and with a sense of humor.
I love what you wrote about the power of language and how you chose “Sick Chicks” so thoughtfully. Can you tell us how you decided on this name?
When I was in middle school my identifier was “that sick chick.” So instead of letting my bullies use that as a negative, I reclaimed it into a term of positivity and sisterhood.
How do you connect with other Sick Chicks who want to share their stories?
Through our social media and through email mostly! I have had incredible young women reach out to me from all over the world wanting to get involved. We also get a lot of connections through word of mouth, which is great and just shows the power of our sisterhood.
If you could sit down and chat with anyone alive or dead about Sick Chicks, who would it be and why?
Oh gosh. There are way too many people. Can I pick two?
Iris Long–she was a member of ACT UP during the AIDS/HIV crisis in the ’80s. She had absolutely no personal connection to the cause, but as a scientist in bio-pharma, she knew there were better options out there and trained the activists in ACT UP how to be the best educated about their disease as possible, how to navigate the FDA [Food and Drug Administration], and truly how to be the best self-advocates possible. Because of all of the health policy work I do through Sick Chicks, it would be incredible to sit down with her and talk about her views on the current system and her advice.
Emma Watson–I feel like this one is pretty obvious. I’ve loved Emma ever since the Harry Potter days, but after her speech at the United Nations she became not just a celebrity, but a true, empowered role model. I think she would have great advice on the direction to take Sick Chicks and would have a lot to add to the discussion of gender equality in the medical system.
What’s the hardest part about running Sick Chicks?
It’s been hard accepting that I can’t help everyone. I get young women coming to me going through incredibly awful times and sometimes it just doesn’t feel like I’m doing enough.
The most rewarding part?
One time after a Sick Chicks event, a mom came to me crying. I was so worried something had happened to her daughter, but instead she hugged me and told me thank you. Before this Sick Chicks event her daughter hadn’t smiled, let alone laughed, in months. Whenever I get defeated or think I’m not doing enough, I think of this moment.
Can you describe your plans for the Ambassador Program?
Right now, it’s a pilot program. We’re accepting applications twice a year–during the summer and winter. We have a couple of international girls currently, but I definitely want to get some more representation from them. I want to do trainings with Ambassadors and connect them with speaking engagements as well as do legislative advocacy trainings, so that they can take groups of Sick Chicks to their local legislators and have a voice in their futures.
How about you? Any plans?
I’m currently attending college at George Washington University, which I’m ecstatic about since it seemed likely college wouldn’t happen for me. I plan to continue speaking out and raising hell in D.C. to fight for change in our medical system. Sick Chicks has already come so far in just these past two years, and I can’t wait to see where the future will take me.
Are there any other things you’d like to say about getting this honor from the Diller Foundation?
The Diller Foundation is supporting Jewish advocates who are making this world a better place, which is so needed in today’s society, when it’s hard to be Jewish. I’m beyond appreciative and with this scholarship they’re not only impacting my life, but helping to change the lives of thousands of girls around the world.
