- Ehlers Danlos
- Interviews
Declan's interview
How did all start?
I was born.
Do you already have a diagnosis? How long did it take you to get it?
I haven't been able to get a diagnosis yet, due to maltreatment.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I'm being treated for my ADHD, fibromyalgia, and depression. I take 900mg of Gabapentin, 20mg of Fluoxetine and I am currently in between switching ADHD meds.
What has been the most useful thing for you so far?
I have a few very supportive friends, which help me get by. I would be starving or dead without them.
What have been your biggest difficulties?
Neither of my parents believe there is anything wrong. It's hard to constantly fight for something so integral to my identity.
How has your social and family environment reacted? Have your social or family relationships changed?
I am no longer very friendly with my mother. My father supports me, but doesn't understand. Most of my friends are really good about it.
What things have you stopped doing?
Everything. I'm house/bedbound, except on Fridays, when I play DND with my friends.
What do you think about the future?
I hope my next doctor's appointment gets me somewhere.
So far, which years have been the best years in your life? What have you done during them?
2017-2018 was before everything worsened. I was cast in a major role in 2 plays, Hamlet and Tom Sawyer. I was able to walk all around town. I miss it.
What would you like to do if you didn’t have your condition?
I would get a job, an apartment. I would honestly just live a normal life.
If you had to describe your life in a sentence, what would it be?
It's hard.
Finally, what advice would you give to a person in a similar situation?
Persevere. Despite all odds and opposition. If you don't advocate for yourself, no one else will.
