Shane, 21, Ehlers-Danlos Syndrome

Name: Shane Somani

Age: 21

Disability: Ehlers-Danlos syndrome (EDS)

I was fortunate enough to meet Shane Somani from Edmonton, Alberta who lives with chronic pain from his condition called Ehlers-Danlos syndromes (EDS). Hearing Shane radiate positivity despite his condition can really put things into perspective. If you’re interested, keep reading!

Adam: Hi, Shane. Thank you so much for agreeing to let me interview you!

Shane: Hey Adam, it’s a pleasure to talk with you and thanks for agreeing to interview me.

Adam: Absolutely! So why don’t we start off by you telling me a bit about who you are so our readers can get to know you better?

Shane: I’m Shane, a 21-year-old man from and living in the Edmonton Area. Although I’m not currently in school, I’ve actually been looking towards getting into college for some digital media courses. Videography is something that I’ve been interested in since I was little. I would also like to go to university for investigative journalism. My hobbies include volunteering, swimming, and I’m also an avid collector of comic books and all-things Star Wars.

Adam: I love volunteering, too! We have that in common! So, Shane, can you tell me a little bit about your disability? As I say with everyone, please only go into as much as you feel comfortable.

Shane: Yeah, so, I was diagnosed with a chronic illness when I was about 15 or 16-years-old called Ehlers-Danlos syndromes, or EDS for short. In layman’s terms, EDS is basically a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Symptoms may include loose joints, dislocations, over flexible joints, joint pain and stretchy skin. A person’s severity of EDS can really vary on a spectrum, but I will always say I am extremely grateful and thankful. Many people my age diagnosed with EDS have had multiple surgeries and/or require feeding tubes, neck braces and wheel chairs. A lot of issues can arise from this condition: you can go from being perfectly fine to being in a life-threating condition in literally a matter of minutes.

Adam: Wow, that’s scary! Shane, I must say how much inspiration you give me living with EDS. Besides the symptoms you’ve already told me associated with EDS, what are challenges you  have encountered because of EDS and what kinds of things have you done to try to overcome those challenges?

Shane: Adam, one thing that truly sucks about having a chronic illness is having this consuming feeling that I cannot pursue the dreams I once had, feeling unable to do the activities I once could or comparing my limitations to those of people my age. Sometimes I feel guilty because there are times when I have to rely on others to do things for me that the average person can do on their own.

Adam: Thank you so much for opening up about your experience with it. Hearing you speak about it is clear to me how hard it has been for you. What would you say is a common misconception about EDS and perhaps what would you want others to know about it?

Shane: Adam, one big thing I want people to know about my illness is that it isn’t as rare as doctors once thought. I wish other people would make themselves more aware of chronic illnesses that impact the people around them. Nowadays with computers and the internet, it’s so easy for people to get absorbed into their own lives. At times, it can feel lonely not knowing who also suffers with EDS in my community suffers. I want people to know that helping someone with a chronic illness doesn’t have to involve money, but it can mean educating yourself about what people around you suffer with. Sympathy can do more than money can ever do! But the thing is, Adam, that most people who are chronically ill have actually learned to just “put up” with the symptoms of their illness—like horrible pain—so they can try to enjoy their life in the moment, especially to enrich the experience of being in the company of others.

Adam: I can really empathize with how you’re feeling, Shane. I know how difficult it feels not having people to relate to. It is for this reason that I started Be In My Shoes: to connect people across the world with disabilities and to know they’re not alone. And if you could go back in time to say something to your 15-year-old self when you first got diagnosed, what would you say?

Shane: I would tell myself to never feel ashamed of the point-of-view that is formed from your experiences. My disability has shaped me by allowing me to see the world from a different perspective. It’s taught me to find hope in the darkest of situations and to understand people in a different light. Loss of strength did never feel like a loss because of what it taught me: to simply let go and see the good in situations instead of the bad. 

Adam: That’s so beautiful, Shane. To see how much positivity you exude despite your experiences with chronic pain is such an inspiration to me. Before we end the interview, is there anything you want to say before you go?

Shane: I want to thank you, Adam, for sharing all these fantastic stories from all these very like-minded people. It’s truly amazing what you’re doing to allow us to raise our awareness and to tell our stories!

Adam: No, thank you, Shane, for believing in my blog and all it has to offer for people with disabilities. 

Shane: It was great to have the chance to chat with you, Adam!

Adam: You as well, Shane!

If you or someone you know has Ehlers-Danlos syndromes and would value knowing someone else with the same condition, send me a message here or at beinmyshoesblog@gmail.com and I’d be happy to connect the two of you.

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