- Dysautonomia / POTS
- Interviews
Greyson's interview
How did all start?
I’m pretty sure I was born like this, but I started noticing symptoms in early elementary school and had my worst flare up (which changed my life) when I was 19/20.
Do you already have a diagnosis? How long did it take you to get it?
Yes! It wasn’t easy and I had to hold my doctors’ hands the whole way. Most were either unable or unwilling to do the testing I needed for diagnosis. As it is a rule-out diagnosis (ie, there’s no one test to prove whether or not you have it; instead you have to rule out everything else and meet certain criteria), the whole process took a few years. Eventually, I requested an appointment at the Mayo Clinic. Six months later, I spent four days getting a battery of tests done, and I left with my diagnosis. They really know what they’re doing over there!
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology
Psychology
Gastroenterology
Rheumatology
Endocrinology
Etc
I would say that psychology has been the most helpful specialty for me. As my physical illness is tied to my mental illness (stress related), EMDR, talk therapy, and psychiatric medications have done a great deal of good for me. Really a world of difference.
What has been the most useful thing for you so far?
Being given the correct measurements for my daily intake of sodium, potassium, and water. Before I was either dehydrated or drinking so much that I flushed the electrolytes out of my system.
What have been your biggest difficulties?
Cluster headaches and migraines are the worst! I’ve tried many medications and have had very little affect.
How has your social and family environment reacted? Have your social or family relationships changed?
My parents have become more sympathetic to my struggles (the bar was pretty low), and they now acknowledge my disabilities to an extent.
What things have you stopped doing?
I stopped playing guitar and some other hands-heavy activities when my tremor worsened and I had to stop bending/stooping in favor of squatting. I’ve stopped raising my arms over my head when I shower and stopped eating animal products. I’ve stopped drinking alcohol. I stopped pushing myself to keep up with abled people’s athleticism and accepted that I’m only trying to do what’s best for my body.
What do you think about the future?
I hope there is better access to healthcare and home care and I hope I can eventually qualify for disability bc of an expansion in its coverage.
So far, which years have been the best years in your life? What have you done during them?
I think 2016 was up there. It’s when I finally found a group of friends that liked me as much as I liked them. We understood each other and I wasn’t like pulling teeth to have a conversation.
What would you like to do if you didn’t have your condition?
I’d love to walk around without compression socks/stockings in the summer. I’d like to use a sauna. I’d like to play more and be able to drink with my friends. I’d punch a nazi but my body cannot run.
If you had to describe your life in a sentence, what would it be?
I work because I have to and love because I want to and it’s free.
Finally, what advice would you give to a person in a similar situation?
Keep pushing until you get answers. Doctors don’t know everything about everything. Come to your appointments prepared and get referrals to the people you need for your testing/diagnosis.
