She Said, He Said, Part 1, Myositis muscle weakness

How Myositis can affect females and males differently

From the beginning of our friendship, Jerry Williams and I realized that we were kindred spirits in many ways, not the least of all, was our shared experience with Myositis. Even though I have Dermatomyositis and he has Polymyositis we have many similarities. We are the same age and at similar places in our lives. Both happily married, settled into comfortable beautiful lives, but both battling our health. I have had DM for 20 years; he has had PM 14 years. We both have overlapping diseases and have had different courses of disease progression as well as treatment.

My cluster of health issues includes Dermatomyositis, Fibromyalgia, Chronic Migraines, Celiac, Recurrent Retina Detachments and multiple other eye issues, IBS, Leukopenia, Cervical Osteoarthritis, Scoliosis, and more.

Jerry’s include Polymyositis, Lupus, Vasculitis, Mitral Valve Prolapse, Neutropenia (since a child), Steroid-induced Diabetes and Osteopenia, Testosterone issues: hypogonadism, mild scoliosis, degenerative disc disease, a perforated bowel, and more.

In exploring the every day effects of our diseases we started wondering how these health issues affect people based on gender; both emotionally and physically. It occurred to us that some things might be harder, stereotypically, for males to accept than females, and vice versa. This is not to minimize anyone’s individual experience; we only seek to see how members of each gender may be affected based on typical ideas of expression. This series of blogs was born out of that question. In every entry, we will each explore a topic (in the first person) and see how it affects each of us differently – we will also invite others to comment and contribute their unique perspectives.

Part 1: The effects of Myositis muscle weakness

She said…

I was never very strong, physically. Looking back, there were early signs that my body and muscles weren’t “normal” as a child but I wasn’t considered “sick” until 19 years old. I was extremely clumsy and accident-prone and was at a constant risk for heat exhaustion when playing sports. My skin was constantly inflamed, usually attributed to overexertion or hypersensitivities to chemicals. I was adventurous and carefree which, with my weaknesses and terrible lack of reflexes, left me vulnerable to injuries. I had at least five fairly major facial injuries before the age of 12.

So being weak, as an adult, isn’t out of my norm. I get frustrated to be so weak that I can’t do normal tasks such as opening jars, doorknobs, changing light bulbs, lifting boxes, pots or pans, vacuuming, reaching in to do laundry, etc. When we moved in December, I felt helpless and slightly useless to lend a hand to the move, but it didn’t make me feel inadequate. I have noticed that since I am a petite female, people often don’t question my weakness. They seem to accept that since I am smaller, I can’t do many things most adults can do. I have never felt lazy because I can’t carry a 50-pound box but as a mom, having difficulty carrying my 25-pound four-year-old was devastating. There have been moments when people, outside of my marriage, have questioned me for what they perceived to be my unwillingness to do dishes or clean my house (I guess the stereotypical role of a wife). I am fortunate, though, that my husband and I have honest and open communication – he understands what I am going through and has never been upset by my inability to do normal household chores or lift heavy things. I have been fortunate to have friends who are extraordinarily strong and have been willing to help me with the lifting I am unable to do, when they are available.

I have often wondered if the experience of compassion and acceptance of muscle weakness is the same for a male with Myositis.

He Said…

As a child, I was always sick. I spent a lot of time in the hospital due to infections, heart issues, and unexplained liver and spleen enlargement. During my middle school years these enlargements and health issues halted my enjoyment of playing soccer and baseball, as doctors were afraid the risk of a ball rupturing my organs was too great. Even so, I was an active child and not always diligent in what I was supposed to do.

In my teens and young adulthood, I was a relatively strong guy. I “hit the gym” a few days a week, worked hard, and played even harder. That all changed for me at age 27 when I began with muscle pain and weakness. The quick onset of my disability required me to leave my job, and that was extremely hard for me to accept, as work was my life.

As a man, many people expect me to be strong and to be able to help with heavy lifting or being able to help a friend move to a new place. As the muscle weakness became more pronounced I became extremely anxious and even depressed. I have always been the more proactive one in my relationships and to no longer be able to provide like I always had caused an emotional toll and a blow to my ego. I went from the one who worked 14 hours a day to bring in the money, to the one depending on my spouse to do so while I stayed home in bed. I felt guilty on many levels and at times, I still do.

Due to the weakness, I have used a wheelchair, walkers, rollators, and for the majority of time, a cane. Even walking with a cane, I found others, especially older ladies, asking me to lift heavy objects into their shopping carts in stores, or a friend asking me to come help paint their living room. These are the types of things I can no longer do that are usually expected of a man, in general.

Trying to help others understand that I am not being lazy or dismissive is hard without sounding defensive. I mean I look perfectly healthy so why wouldn’t others expect me to be able to help?

 


 

 

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Emily A. Filmore is an author, speaker, and is one of the founding members of Myositis Support and Understanding Association. She wrote "The Marvelous Transformation: Living Well with Autoimmune Disease" about her experiences with dermatomyositis and other chronic illness (Central Recovery Press 2015), the "With My Child" series of children's books about family bonding (Withmychildseries.com), and is the co-author of "Conversations with God for Parents" with Neale Donald Walsch and Laurie Lankins Farley and was released in 2015. (Rainbow Ridge, 2015).

View more information: Emily Filmore

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