Sandra's interview
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How did all start?
I don't know how it started, still a mystery. And I believe I had it a while before the actual diagnosis.
Do you already have a diagnosis? How long did it take you to get it?
Yes- Over a year thanks to one event - a wasp sting. Had it not been for that, I believe doctors would still be going around in circles.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist Endocrinologist Gastroenterologist Rhumatologist Dermatologist The most important and useful doctor though is my immunologist
What has been the most useful thing for you so far?
Getting my application for disability granted
What have been your biggest difficulties?
Struggling with daily symptoms, and the fact that I don't look sick, so people just don't get it. Changing my lifestyle and habits has also been challenging.
How has your social and family environment reacted? Have your social or family relationships changed?
Oh yes! I've lost a lot of "friends". Family has to adapt to my new lifestyle. Friends also have to be more understanding and accepting of my fluctuating condition and symptoms. They all have to learn to manage the unpredictability of it.
What things have you stopped doing?
Sport in a fitness centre Working Socialising in crowded places Going out to restaurants Staying out late
What do you think about the future?
Sometimes I'm confident that "I've got this". Sometimes I'm scared. But it is rather disheartening to think that there is no improvement expected, and this is the life that I will be living for as far as I can see.
What would you like to do if you didn’t have your condition?
Work Sport
If you had to describe your life in a sentence, what would it be?
A painful, unpredictable mess.
Finally, what advice would you give to a person in a similar situation?
Emotions evolve around this challenging disease. So let the emotions flow. Life changes, and we loose friends, but also meet some other extraordinary strong people. So the best is to learn to adapt, change, and let go.
