How did you feel when you were first diagnosed?

Posted by yesim @yesim, Aug 20 4:02am

When I was first diagnosed with fibromyalgia, I felt strangely relieved. But being diagnosed with Sjögren's syndrome didn't relieve me. I think this time it was the opposite—I was a little scared at first. After four very difficult months, I wanted to retreat into my shell. I distanced myself from everyone and everything. And I think I made room in my life to accept Sjögren’s more calmly... I’m doing better now... How about you?

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betty41 | @betty41 | Aug 20 9:42am

I was also relieved with the diagnosis of fibromyalgia. I had been in pain so many years, but now I know I am not crazy. The good news I would never have to have surgery with it, bad news no cure. I try to exercise everyday with walking and yoga. Stretching is wonderful.
I have been tested for sojurens, but nothing positive.

krg351 | @krg351 | Aug 21 12:11pm

I was diagnosed with Behect’s disease a year ago in May. I felt like I had some answers finally to the canker sore that I’ve had for years. The prednisone is help manage the out breaks but now I wanting more answers and possibly a different medication instead of a steroid. I’m trying to get into an autoimmune specialist to see if there is anymore answers out there.

pml | @pml | Aug 21 9:57pm

Hi Yesim,
That's good that you are now becoming more accepting of your diagnosis. It's hard to get that kind of news about your body. When my husband was first diagnosed with lung cancer, we both cried. He was very healthy and active. He couldn't be sick! But we had to accept that he was. We got through it with good doctors and a lot of prayers answered. My husband finally died of the lung cancer last year, but we had 14 wonderful years together before the inevitable happened. We learned to live and enjoy each other for the moment that we were in and just leave the future up to God. He controls it anyway.
I'll say a prayer for you.
I wish you the best.
PML

jw9 | @jw9 | Aug 25 5:03pm

@yesim
It's hard to have one diagnosis that you learn to cope with, then get a new one. But that is exactly how it's been for me living with autoimmune illlness for 30 years. I was ill in the early 90's and there was kind of a craze or something of everyone who wasn't understood being told they had chronic fatigue syndrome. That was me until a doctor saw something else in my bloodwork. I was treated for lupus, then that didn't fit. For the past 10 years I have had a biologic infusion every 8 weeks for RA. I was feeling fairly stable with this until 2 years ago when I began having rashes, eczema, skin discoloration, and back pain that was nothing I'd ever had before.

My rheumatologist told me, "Maybe we've been treating your psoriatic arthritis with the biologic all these years."
I guess I'm thinking that I've gotten used to "new diagnosis" time and time again. I've come to feel more steady in the things that are important in my life that don't have to do with disabling chronic illness. Maybe it's because of age I feel that I have made it before and will make it again. I think I forgot to say the longest autoimmune illness I've lived with is Sjogrens Syndrome! That's why I replied in the first place! I thought your question is a great one to help people begin to cope.