Jipster's interview
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How did all start?
Pain during puberty, but the real problems started after I became a mom at age 25.
Do you already have a diagnosis? How long did it take you to get it?
Yes. I was misdiagnosed at age 8. I self diagnosed at age 25 and got the confirmation 3 months later.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Physiotherapy, pain management.
What has been the most useful thing for you so far?
Braces and realizing I had to 'wear' my body differently than my mind wanted to.
What have been your biggest difficulties?
Creating Music ergo playing the piano and the guitar. Placing and spreading my fingers, grabbing chords. It got all blocked within my wrists so it was utterly impossible. Walking through old cities that consist of irregular streets, the difference in height of tiles give me a throbbing ache in my pelvis and hips.
How has your social and family environment reacted? Have your social or family relationships changed?
No. I was short. No name could change that fact or therefore how I got treated. I was severely bullied at school though.
What things have you stopped doing?
With some sports I take it a bit easier. I am very active though and I'll take 2 to 5 days bedrest if that means I can enjoy myself.
What do you think about the future?
I have developed Osteopenia in my left hip and a lower vertebra. Damage is inevitable.
So far, which years have been the best years in your life? What have you done during them?
Trick question since all of my years so far have had incredible moments that are engraved in my memory. Though I have never let my conditions stop me from doing anything.
What would you like to do if you didn’t have your condition?
Same things I do today though I would experience way less pain and discomfort.
If you had to describe your life in a sentence, what would it be?
The only disability is your own idea of disability. I'd never let it stop me from following my wishes and desires.
Finally, what advice would you give to a person in a similar situation?
Do what you want. Don't become a porcelain figure on a shelf. But keep in mind that you just might need to find a different way to approach things. Listen to your body and uphold its boundaries. All is possible and there is no limit to what you can accomplish.
