- Chronic Fatigue Syndrome / M.E.
- Interviews
penelkuhn's interview
How did all start?
i was taking a nap between high school classes and my full-time job, and i couldn't get up from the couch.
Do you already have a diagnosis? How long did it take you to get it?
took 46 years to diagnose ME.
For what medical specialties have you been treated? What has been the most useful specialty for your?
rheumatology, neurology, neuroimmunology
most useful was rheumatology
What has been the most useful thing for you so far?
rest, quiet.
What have been your biggest difficulties?
getting mundane tasks done; cleaning, showering grocery shopping
How has your social and family environment reacted? Have your social or family relationships changed?
they react with dismissive behaviors
What things have you stopped doing?
working, doing research, writing software, engaging in numerous hobbies.
What do you think about the future?
unknown
So far, which years have been the best years in your life? What have you done during them?
heavy question at the moment
What would you like to do if you didn’t have your condition?
run, jump, play. and feturn to my research.
If you had to describe your life in a sentence, what would it be?
disappointing
Finally, what advice would you give to a person in a similar situation?
hang on. do the best you can.
