- Sarcoidosis
- Interviews
Jo's interview
How did all start?
I think in 2006
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was diagnosed in Jan-17.
It’s taken 11 years to finally get a diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Gynaecology, gastroenterology, maxillo-facial & respiratory
What has been the most useful thing for you so far?
Being taken seriously and getting an actual diagnosis!
What have been your biggest difficulties?
Endless trips to my primary care doctor and hospitals. Various surgeries and a cancer mis-diagnosis.
How has your social and family environment reacted? Have your social or family relationships changed?
When I was initially diagnosed with Lymphoma it was very tough for my family and friends. Now, I try hard to not let the Sarcoidosis affect my relationships but it’s hard.
What things have you stopped doing?
Sometimes I have had to cancel trips away or an evening out due to pain/fatigue. I have to rest more than I did.
What do you think about the future?
I try not to think about the future! I did worry that I can get worse but I just try and take each day as it comes.
So far, which years have been the best years in your life? What have you done during them?
Despite my illness I’m having the best time now - I’ve realised how loved and secure I am.
What would you like to do if you didn’t have your condition?
I’d go out more, be seen less as “Jo with an illness”!
If you had to describe your life in a sentence, what would it be?
I’m happy, loved and have a great family.
Finally, what advice would you give to a person in a similar situation?
Persevere with getting a diagnosis and then learn to deal with it - don’t become a victim of it.
