- Ehlers Danlos
- Interviews
Alex's interview
How did all start?
I remember having weak and flexible joints as a child. I'd often hurt my ankles, and I once sprained a finger rolling a ball on the floor. I have exercise induced asthma, so when I'd run around at recess I remember not being able to breathe and needing to sit down and cough.
Do you already have a diagnosis? How long did it take you to get it?
I have been diagnosed with PTSD, asthma, and migraines. I've gotten a "probably" on EDS and POTS. Nothing about chronic fatigue/ME.
Everything took years. I didn't get diagnosed with asthma til I was almost 20 even though I'd had it my entire life. Everything else got diagnosed in my mid twenties.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've been referred to a few specialists, but finally finding a caring/knowledgeable primary doctor has been the most helpful.
What has been the most useful thing for you so far?
Trying to let myself use the things that help me, like medication, braces, etc
Instead of convincing myself I don't really need them.
What have been your biggest difficulties?
Besides always being tired and in pain, people doubting that I'm sick. It's fucking hard.
How has your social and family environment reacted? Have your social or family relationships changed?
The sicker I've gotten, the less patience people have had for me. I think people get tired of me being like this.
What things have you stopped doing?
A lot. In the 6 years since I got chronic fatigue syndrome, my whole life has changed. I stopped working, going out with friends, volunteering, hiking.
What do you think about the future?
I try to have hope, but at the same time I see myself getting worse. I don't want to run out of time to do the things I still want to do.
So far, which years have been the best years in your life? What have you done during them?
Honestly, I'm in them. Finally moving away from the place and people who made me miserable really helped. When I can I love to go out and enjoy nature by birding or hiking. I went kayaking once which I've always wanted to do.
Mostly I read and watch things. I love cooking and do it once or twice a week. Its nice finally having a home I feel safe in.
What would you like to do if you didn’t have your condition?
I wanted to be a wildlife rehabber. I got my degree, but I'm not well enough for something like that. I can only be out of bed a couple hours a day.
If you had to describe your life in a sentence, what would it be?
My life has been hard, and strange, but its mine.
Finally, what advice would you give to a person in a similar situation?
Take care of yourself. Don't be your own worst critic. Find joy where you can. Only make time for those who respect you.
