Dancing is her great passion – Jana L. distinctly shows this on her social media channels. She uses the attention of her thousands of followers to make her disease ME/CFS better known; a disease that makes physical exertion and thus also dancing mostly impossible. Why she does not let herself be stopped and how she otherwise rolls, she tells us on REHACARE.com.
Name: Jana L. Age: 21 City: Karlsruhe, Germany Occupation: At home for four years, unable to work, no training possible Impairment: For eleven years I have been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Tachycardia Syndrome (POTS), Fibromyalgia and therefore I have been longer ill than I was healthy at all.
Jana L.: Everything, every little thing. I am grateful and happy for so many things!
What have you always been wanting to do and why have you never done this so far? Jana L.: I wanted so many things: To see the world, to ride a motorcycle, to do extreme sports... But I never got around to it because I fell ill when I was ten years old. My disease takes away my complete independence. I can neither make a sandwich nor sit in the car for more than 30 minutes. Often I can't even get out of the house in a wheelchair for weeks, I can't even keep myself busy at home and have to spend most of my time lying down and resting. There is no need to think about all this. I would dare to do anything!
Which person has influenced you most? And why? Jana L.: My mom! I spend my time with her 24/7. She is always there for me – she is my mother, best friend and carer. She makes my situation bearable and from her, I take the strength to fight.
You have the chance to become the Commissioner for the Disabled. What would you do first? Jana L.: To create a project, so that all politicians experience on their own how it is to live with all kinds of diasbilities or what it's like to need a wheelchair, and how many barrieres there are still for diasbled people. I think, that one can only understand disabled people and really want to change something, if one learns it the hard way.
What is especially near and dear to you? Jana L.: That my disease ME/CFS is finally better known and – above all – recognized! Many doctors do not even know it and therefore often blame the condition on the psyche.
I would like to be once...
Jana L.: A dancer, but preferably healthy.
To which question would you like an answer?
Jana L.: Why do many people not understand that, despite being in a wheelchair, you can move your legs or even stand for a short time, or that not every disability is directly visible?
What I wanted to say...
Jana L.: Be thankful for every little thing and every moment in your life – someone else would give so much for just that. Health and happiness are the most important things.