- Chronic Fatigue Syndrome / M.E.
- Interviews
Ryland's interview
How did all start?
A month after a mono infection. I had completely recovered, and then I suddenly got sick. Since then, I have been chronically ill and disabled.
Do you already have a diagnosis? How long did it take you to get it?
I have a POTS diagnosis, but not a ME diagnosis, yet. It took less than a year to get my POTS diagnosis, which is rare.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Internal Medicine, Primary Care Physicians, Cardiologist, and soon a Rheumatologist. Thus far, Cardiologist has been the most helpful, but I suspect Rheumatology will help more.
What has been the most useful thing for you so far?
Pacing. Resting, pacing, and advocating for myself and my energy (and lack thereof).
What have been your biggest difficulties?
Ableism from my family and Doctors not taking me seriously/gaslighting me.
How has your social and family environment reacted? Have your social or family relationships changed?
My family has a hard time believing me and my illness. They tell me to "just think positive" and "why don't you just get up and do something" when I try to explain my illness and lack of energy.
What things have you stopped doing?
Enjoying the outdoors and shopping, I stopped going to school, stopped working, stopped socializing. I've stopped living life, because I need mobility aides and diagnoses but do not have access to them yet.
What do you think about the future?
I think it will be better than this.
So far, which years have been the best years in your life? What have you done during them?
The past few years have been simultaneously the best and the worst years in my life. I have lived, and stopped living, during these years.
What would you like to do if you didn’t have your condition?
Live. Go to work, go to school, and support myself.
If you had to describe your life in a sentence, what would it be?
"Hopeful yet stuck."
Finally, what advice would you give to a person in a similar situation?
Pace yourself. And remember, some things are worth crashing for.
