- Behcet Syndrome
- Interviews
Robyn's interview
Do you already have a diagnosis? How long did it take you to get it?
All of my specialists believe I have Bechets, I’m just waiting to see my rheumatologist for the final diagnosis...I have all of the symptoms for BD.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Right now, I’m just receiving T3’s for pain which doesn’t help much, I take antidepressants for my depression and anxiety meds for my anxiety.....I’m trying some herbal remedies to help alleviate some of my symptoms until I receive proper treatment.
What has been the most useful thing for you so far?
Joining HealthUnlocked...I’ve been able to chat with people who are going through the same thing that I am. They’ve been really helpful as when you read about BD, they don’t tell you every symptom but when you chat with someone who’s been diagnosed with it; they share so much. You really feel like you’re not alone.
What have been your biggest difficulties?
Waiting. My symptoms have been getting worse and I guess because it’s so rare, no doctors knowing what to do. I’m at a point right now where I can barely walk - I use a cane but the pain and swelling is so intense......I’m cocooning a lot because it’s just too painful to move.
How has your social and family environment reacted? Have your social or family relationships changed?
My family moved last year...about 5 hours away so that’s taken it’s toll on me. I literally have no support system - my friends are dropping like flies. They don’t understand...over promise, under deliver. I’m on my own with no help. I need help but because I’m not on Ontario Disability, I don’t qualify.
What things have you stopped doing?
Socializing, housekeeping, exercise, cooking on a regular basis, reading, seeing my family on a regular basis, eating on a regular basis....grocery shopping, any kind of shopping, riding my motorcycle, I can’t even bend down to cut my toenails.
What do you think about the future?
I try not to right now, I’m taking each day at a time otherwise I get more depressed.
So far, which years have been the best years in your life? What have you done during them?
In my 30’s I was vibrant and working FT at a great job, living common-law, had many friends....did lots of things, had a dog which I loved dearly and I wasn’t sick.
What would you like to do if you didn’t have your condition?
Be at a new job that I enjoyed - less stressful, be able to complete all of my daily living tasks, go out and do things with friends. Enjoy shopping again, yes, even grocery shopping. Get back into cooking proper meals - lose the weight that I gained from the antidepressants and such. Be active. Get out and enjoy my life.
If you had to describe your life in a sentence, what would it be?
Being alone is one thing but feeling lonely and constant pain is almost unbearable.
Finally, what advice would you give to a person in a similar situation?
Keep on top of your doctors, if you feel they aren’t helping enough, either push harder or go elsewhere. You are your own advocate - it’s your body. Learn and research your illness, try to find out everything there is - seek out chat rooms, other people can offer advice and lastly, rest when you need it. Don’t fight it, your body says rest, then rest. Take the time for your body to heal and never give up.
