Jasmine from Embrace the Brace about Ehlers Danlos, Medical School, Competitive Climbing, and Running A Health Blog
Website/Blog, Twitter, & Instagram Handle
What is your disorder? *
Ehlers Danlos syndrome with significant neurological and digestive motility complications
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
(I was in pain everyday by 12, daily illness by 17, and severely dysfunctional by 20 ) In the most important ways I’m the exact same person as I was before. I’ve tried to hold onto to everything that matters to me. Like I haven’t been able to hike for a few years, but I make sure to get out into nature in other ways like riding a trike or using a scooter. My greatest passion is art were I’m continuously making new tools and developing alternative methods to keep doing what I love. I’m determined to keep exploring new ways to keep all of my essence alive. The main difference is that my mental health has significantly improved since my illness has been explained. Knowing that the pain I experience is real has allowed me to reconnect, respect, and honor my body. Before I knew what was wrong, I was angry and disappointed with myself for feeling like a complainer and struggling to physically keep up with everyone around me. Illness also forced me to put academic studies on hold and withdraw from medical school, but my studies have never defined me in any way and I continue to learn on my own so I can’t say I feel like I’m missing out on being anyway I was ever supposed to be anyway.
What would you do if you were not dealing with your invisible illness? *
I would like to say doing exactly what I am today; writing, making art, creating with the intention of promoting growth, supporting the people around me with similar values and trying to figure out how to make a living of this compilation. Honestly though, if I hadn’t gotten so sick, I may have waited until retirement to pursue my real dreams.
What would you like people to know about your daily life? *
I wish people knew that we are all more similar than we are different. And that I'm not trying to stare down the world ... just trying not to run into moving targets ( poor visual coordination ).
What would make living and moving in the world easier for you? *
That’s an easy one! A wheelchair I’m actually able to propel/ move and a self driving van to transport me and the chair independently. As someone who isn’t safe to drive, easier access to transportation would probably be the biggest help. It would also help a lot if society wasn’t so judgmental and disturbed by lying down in public, putting feet on chairs, and stretching. Or if not, they should at least come up with some sort of rentable recover and rest stops at major public areas for people who need somewhere to lie down.
Do you have any life hacks? *
I have a whole website dedicated to life hacks for EDS and related conditions with tons of practical tips and tricks. EmbraceTheBrace.com But here’s a mind hack that should relate to all invisible illness- Know that you’re absolutely not obligated to explain yourself to anyone, EVER. If you’re sharing your story with strangers to raise awareness, I recommend keeping a print out of something you can give out instead of continuously reviewing your personal story. Focus on explaining how friends and family can help support you, as opposed to trying to get them to fully understand your illness. And remember to listen to all advice with a grain of salt. Believe in the power of your own intuitions.
What kind of support do you get from family or friends? *
My family has been a huge help financially, it scares me to think about what life may be life for others who are sick with any financial support. I know I would be so sicker probably completely debilitated and reliant on others if I wasn’t able to travel for the medical care and surgeries I’ve received. This is not ok. I have an amazing group of friends who are always able to look past anything medical. For the most part there are people I can connect with when I need help, a distraction, or an open heart to listen. Living like I do is hard for everyone involved and I’ve lost or become detached from many friends, but the ones who’ve stuck with me or joined my life after getting sick are the strongest and most genuine humans I’ve ever encountered. When I was at my worst though there were nearly two years of being sick alone because my friends and even sometimes family at the time didn’t know how to be there with me.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
My “invisble illness” has been quite visible the last four years with the use of braces and mobility aids, but I will say I’ve noticed a huge difference since I’ve come out of a large neck and back brace I’ve had a lot more of these issues. I’ve had help with my bags refused while traveling because I was caring a backpack and must be fine. I’ve been asked to leave stores with my non traditional mobility scooter because if I can stand I should be able to walk. The most common problem I have is when people in a rush or in crowds get legitimately mad at me for moving slow, which is why I now make sure to always have a cane with me in any public places to avoid this confusion and people running into me.
How has your invisible illness affected your relationships? *
It’s given me a way to weed out people are only interested in superficial relationships. The biggest thing I struggle in any sort of relationship is how my being in pain affects others. I know it makes people uncomfortable so I always want to try and hide it even when it’s not a health choice. When I’m in pain it's really hard to be patient and mindful of other people because at times I go into a fight or flight mode and that really tends to push people away when I need them most.
Is there anything you are afraid to tell people in your life? *
I’m definitely afraid to tell people I’m in pain. Sometimes I’m also afraid to ask for help sometimes out of fear of rejection or being judged.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
I have no way to know, but I do know that being young and specifically a young women has made it less likely for my complaints to be taken seriously.
What is your best coping mechanism? *
The most effective coping mechanism for me is creating. When I’m in the flow of creation I loose track of my body and feel free.
What are you the most concerned about and the most hopeful for in the future? *
I’m concerned about the general state of our countries healthcare system. It seems to have strayed so far away from the core of healing. I’m afraid that there are many people who aren’t getting important treatments covered by insurance and at the same time that there are many people are on unnecessary medications or getting surgeries that don’t help solve the problem. It all seems so out of balance with no focus on the individuals well being. I’m hopeful that I’ll find a way to be independent and give help to others in need.
What is your favorite swear word?
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
EmbraceTheBrace.com I would like to expand awareness about my website with the hope that I will be able to collaborate and guest blog more often. I want it to be a vision for the EDS community and group project. You should probably also mention the competitive climbing I do. https://jasmineraskas.wordpress.com/climber/ I would like to emphasize that I don’t recommend it for most EDSers and that I’m willing to take on pretty crazy risk for the benefit it personally brings to me.
What is the hardest and/or best lesson your condition has taught you?
Life is terrifying, temporary, and unpredictable. Choose to trust yourself and the kindness of others.
What is the best purchase under $100 that helped your life
Bean bag heating pads that give off moisture
Any questions you think we should add to this list?
How do you stay so positive? This is a common misconception do to misrepresentation on social media. I’m not at all always positive I inevitably have a 5 minute breakdown almost everyday and go through days or even weeks feeling mentally and emotionally exhausted by the stress of pain and chronic conditions. I’m a big believer in being as negative as possible when it's the time to feel it and trusting that it will pass.