Fibromyalgia and starting a tech business as a spoonie
I bow down to this rockstar. Eva manages her chronic illness, fibromyalgia and has a tech startup to help us spoonies find the best medical care for our condition. It is called Wellacopia. Go visit now while you listen! I hope you adore her as much as I do. With Eva's unique perspective and knowledge of the sometimes scary world of medicine and diet, she will hopefully be playing a larger role in our chronic illness podcast!
Name *Eva Lana Owner of Wellacopia a health app for spoonies
What is your disorder? *
At what age did your disorder become a daily issue? * 12
Who were you before your illness became debilitating? *
an adventurous person and professional dancer
What would you do if you were not dealing with your invisible illness? *
dance every day
What would you like people to know about your daily life? *
I run a startup for people like myself with chronic illnesses while I cope with them myself
What would make living and moving in the world easier for you? *
having the proper support for my specific needs...and better weather
Do you have any life hacks? *
positive mantras and a superb personal support system at home Tempurpedic Mattress
What kind of support do you get from family or friends? *
understanding that they don't understand but are willing to be there for me anyway
Have you ever had someone not believe you have an invisible illness because of your appearance? *
of course plus my diagnosis is the known crap-shoot of diagnoses especially because it cant be formally diagnosed
Has this been a positive or negative experience? *
negative but didnt impact me long term
Would you care to relate the details of what happened when someone didn't believe you were disabled?
I felt the need to explain further. sometimes it worked, sometimes it didnt but regardless I always had to explain that I'm aware of it being a "crap-shoot diagnosis". basically I belittled my own experience but made it clear that it was very real at the same time.
How has your invisible illness affected your relationships? *
It has shown me who my real friends are and a major contributor in feeling that my husband was in fact "the one"
Is there anything you are afraid to tell even the people closest to you? *
I also have Bipolar disorder type 2 (more like rolling hills of emotions rather than manic sharp spikes). I dont talk about it because I use to be a "drama queen" and bipolar sounds really bad, even if they can kinda get what type 2 is in comparison to type 1. some say I'm just emotional. also I'm sure it contributes to my illnesses, and others may think I am faking it BECAUSE I use to be dramatic.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Of course, but not just because they are invisible but even blood tests and scans don't really show anything, so empirically I am "fine"
What is your best coping mechanism? *
Meditation and exercise when I can and generally having good people around me who understand
What are you the most fearful of and hopeful for in the future? *
I am scared of degeneration as I grow older, pregnancy and post-partum as well
What is your favorite swear word?
Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *
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.
Any questions you think we should add to this list?
I guess this is too late
What is the hardest and/or best lesson your condition has taught you?
your illness doesn't define you - or you can let it but only for the better