The Other Pain of Living With Myositis

I’m feeling more and more isolated and alone because of this illness. I’ve held off writing publicly about it because then there’s pity and the kids would know, but the reality is I think they’re already very aware.1 min


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I’m feeling so incredibly, painfully lonely. I don’t know what to do with the, almost, physical pain of it. Mostly I can fake it, but it’s getting harder and harder. I’m feeling more and more isolated and alone because of this illness. I’ve held off writing publicly about it because then there’s pity and the kids would know, but the reality is I think they’re already very aware. I’m just feeling lots of downs at the moment. Always fighting, never winning in spite of knowing I’m a good, deserving person. What does it all matter?

My soul is infused into my kids and they are blooming and growing and flying; I’m on the ground watching as the strings, one by one, slip loosely away, as they should. I just answered the “what does it all matter?” question. 

Myositis patients, donate plasma

Here I am just rambling. I’m sorry, I just had to get it out. High school friends were getting together. The last time we had a reunion was 9 years ago; I had it at my house. I was about 3 weeks post-finalized divorce, physically healthy and ready to rebuild my life, not knowing the volume of fights to come. Now here I am, very much single and alone, sick, overweight from steroids, and totally broke. I backed out of going. I had no emotional strength to see them all this time; I knew it would leave me feeling more worthless than I already feel, as those that are going (extremely kind/good/caring people) are successful and comfortable, as they should be at this point in our lives. I just knew it would be more painful to be around them, than not. Not a self-pity party, more self-preservation, knowing the precarious emotional state I was already in. 

Please know I’m essentially okay or will be. I’ll try to get myself into counseling. Blah blah. Just tired of fighting (still trying to get benefits for disability, still trying to get courts to enforce, always trying to get doctors to cooperate) and tired of being the sick one, tired of the pain, and the itching, and the inabilities.

I will bounce back.


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Linda Rabinowitz

I'm a mom of 4 kids, diagnosed with Antisynthetase Syndrome/Dermatomyositis in 2016. My kids are all adults now (or so the law says lol!!), but my youngest who is 18 has autism and, while he continues to make incredible strides in independence, there is still a lot he needs compared to most 18yos. I was a stay at home mom for over 20 years until getting divorced. I returned to work in very early 2015, then had to stop in July 2016 as my job was very physically demanding and, being that my wrists would collapse when trying to hold even one shoebox (I worked at New Balance), it was time to stop. Now I'm just trying to find my way in this new world of chronic illness I've been thrown into.

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Myositis Pain & Opioids Survey

Please take the anonymous survey whether or not you experience pain with myositis. Survey ends June 4, 2019. This initial data is needed to determine if a larger study is warranted.

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