Kressenda: Strong Woman: Body Positivity: Ehlers Danlos Zebra: Mental Health: Chronic Illness Podcast
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What is your disorder? *
& more lol
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
PhD student, statistician, professor
What would you do if you were not dealing with your invisible illness? *
What would you like people to know about your daily life? *
Every day is different and you never know what the day might hold so it’s important to celebrate every win of the day.
What would make living and moving in the world easier for you? *
A cool exoskeleton?
Do you have any life hacks? *
I do a lot of taping and bracing in order to help prevent subluxations
What kind of support do you get from family or friends? *
I am incredibly lucky to have truly amazing and supportive friends and family. I don’t think I would be able to do what I do if it wasn’t for them.
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? *
All too often. The Paralympic committee doesn’t believe EDS is an applicable disability to compete so I’m constantly fighting those rulings.
How has your invisible illness affected your relationships? *
I’m blessed to have a boyfriend who understands that every day has a question mark. I am certain we would be far more active if it wasn’t for my health.
Is there anything you are afraid to tell people in your life? *
How frightening every day can be. You never know if it’s the last day you get to do something.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Often they don’t believe it’s a big deal.
What is your best coping mechanism? *
Acceptance. You don’t have to like it but you have to accept it. It’s freeing. Like I accept that someday I might not get to lift anymore. I accept that someday I might not be able to walk. Accepting those hard truths helps you move forward.
What are you the most concerned about and the most hopeful for in the future? *
I’m hopeful that I will inspire other spoonies to come out and try things they were afraid of. It might be something like a walk or asking someone out on a date. It doesn’t have to be the gym. Anything. Just try something.
What is your favorite swear word?
I say fuck a lot. A lot a lot
What is the hardest and/or best lesson your condition has taught you?
To embrace every day as the last
What is the best purchase under $100 that helped your life
A tens unit. Priceless.