- Behcet Syndrome
- Interviews
RonnieJ's interview
How did all start?
Really I was sick a lot but until 2014 with sudden onset of numerous problems, seizures, migraines, partial paralysis, dysphagia, rashes, severe body pain etc... I didn't know how bad it was. Then I was too sick to help myself.
Do you already have a diagnosis? How long did it take you to get it?
No we are still working on diagnosing. I move and travel a lot so it's not easy.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurological treated for migraines and seizures. Dermatologists for rashes. I've seen pain management, surgeons, physical therapy. Gastroenterology for stomach issues. Urologists for hemorrhagic cystitis. Third rheumatologist looks like a charm.
What has been the most useful thing for you so far?
My PCP telling me there are diseases I could have even with fairly normal blood work. Before that I was lost in not understanding why my body would be doing this to me and Noone else. I felt alone and questioned my mental status.
What have been your biggest difficulties?
Getting others to understand how sick I've been and am.
How has your social and family environment reacted? Have your social or family relationships changed?
At first everything got horrible. Everyone misunderstood me and even didn't believe me. I was angry and confused. And probably not the nicest person. I was in extreme pain. It devastated me. I've worked very hard on family to make sure they know who I am. And that I say what I mean with no excuses. I call things exactly like they are now and do not downplay my symptoms for anyone.
What things have you stopped doing?
Working, driving and pretty much all social activities.
What do you think about the future?
It's bright. Life always hands us obstacles. It's what we do with them that matters.
So far, which years have been the best years in your life? What have you done during them?
Best years honestly have been after I got sick. I know I'm miserable but I appreciate so much more than I used to. Everything got so much more precious to me with fear of losing it all. I get to be with my grandchildren now as I'm too sick to live on my own. It's truly my most happiest I've been.
What would you like to do if you didn’t have your condition?
Have more energy and pain free days to help others. If I could just make one sick person know they are not alone I would.
If you had to describe your life in a sentence, what would it be?
You wouldn't believe me.
Finally, what advice would you give to a person in a similar situation?
Know things get better. You might be on a roller coaster but keep pushing forward and don't give up.
