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Dear Andy Thank you.
I have had polymyositis/dermatomyositis for 5 years and so many of your words resonate with me. I cried uncontrollably when I read it. The ups and downs, feeling the disease defines me , meds, IVIG, complications etc
Unfortunately I don’t have a myositis support group where I live and have a hard time doing things online, but today I did and read your letter
My Dr said “I would be fine in 3-4 months” which many people are, I guess. I fall in the group that does not respond so well. When I went to the ER because I could not breath well I was labeled with “anxiety disorder”
If I had read your letter a long time ago it would have helped me so much.There are so many symptoms, besides the muscle problems that Drs did not tell me about, and when I told them they dismissed them so I thought I was crazy Particularly the difficulty with memory and concentration.(and the night sweats!!) I forget entire conversations and have a hard time reading .I used to have an almost photographic memory I thought I might be developing dementia. I describe it as “The Fog” and my ability to cope goes up and down with it. I have minimized my symptoms to others because I am afraid they will get bored with me, and because it helps me be in denial.You have opened my eyes to this
Mainly the difficulty in accepting that this is here to stay and that ups and downs come with it. The hardest part is I always get disappointed when I improve and then slide bak, the darn uncertainty of it seems to have me paralyzed. But you define it so well :I live in turmoil and conflict and that is who I am now. I have adapted as best I can ,in the practical sense but the emotional one I realize reading your letter is far behind because I get angry every time I slide back . I see myself as weak when in fact when I read your letter and realize what I have survived I should be proud not ashamed Thank you so much for sharing
Andy,
I cried when I read your article. I too was diagnosed 3 years ago (with polymyositis), mine came from a neurosurgeon giving me the results of my muscle biopsy. I thought the appointment was just to check the wound, so I told my husband to go to Jury duty that day instead of being by my side as he had through the previous 6 months of tests.
You see the original diagnosis I had been given was ALS/Lou Gehrig’s, so instead of being upset, I was thrilled to hear it was only “Poly”. I knew that was a cakewalk comparatively and I was grateful. As a result I have been in “denial” about how debilitating this condition is (and in my case, getting progressively worse). Your piece gave me the courage to accept the severity of this rare disease and the inspiration to work harder at finding the resources I need to cope with it both physically and emotionally. Thank you for so adroitly articulating your feelings but most of all for your honesty.