by Lorelei Cohen

Created on: September 18, 2009   Last Updated: April 10, 2011

There are far too many days when I am so fatigued that the most that I can accomplish is to sit, half dazed, staring into my computer screen. I cannot count how many nights I am awake more than I am asleep. As soon as I stop moving the stiffness creeps in, and with it the pain, that is almost too much for me too deal with.

I look normal, and I act pretty normal, but I do not have the capacity to live a regular life like other people do. I am lucky if I can hold a part time job and even luckier if I have any energy left over to play. Maintaining personal relationships can be physically draining to the point that I restrict my social life to the most important people in my life.

Those around me do not understand my illness, and they often ridicule me, or label me as lazy. Many medical professionals don't have an adequate knowledge of my illness to treat me. I spend every waking minute of my life judging what activities I will expend my energies on. If I judge correctly than I can reduce the fatigue, pain, and damage that will be done to my body that day. I have Myositis, a very rare, and often chronic illness.

There are a number of forms of myositis. Mine is Polymyositis, which in laymans terms, means that I suffer from multiple muscle inflammation. Although myositis is characterized by muscle inflammation, most forms of the illness also come with other overlapping and additional inflammation, or arthritis. My disease is no exception.

I was diagnosed as having JO1 antibodies which are a marker for people with antisynthetase syndrome. This means that in addition to my Polymyositis, I have multiple forms of arthritis, interstitial lung disease, severe Raynaud's phenomenon as well as other inflammatory based illnesses included in my diagnosis. As the illnesses come and go within my body I feel like the incredible changing woman. I can see why some doctors have difficulty understanding the illness.

One month I may be fighting to breathe. The next month my lungs will be fine, but I will be suffering from a severe rheumatoid arthritis attack, and barely able to walk. Then the illness will invade my muscle and I will be weak, groggy, dopey, and severely fatigued. I fight each flare individually and on the terms that the disease sets out for me.

Although the illness still sometimes gets me down, I have grown accustomed to the highs, and lows of my disease. I have learned to be proud of myself for having learned to adapt my lifestyle to my illness, proud that I am able to accomplish the degree that I am able to, proud that I am still fighting with every breath in my body to lead the best life that I am able to.

Myositis is not visible to the naked eye. You might suspect that I am stoned or drunk when my words don't come out right. Sometimes I cry because I am too fatigued not to or I trip because my joints or muscles are not working as they should. I am a little overweight as are many people with Myositis. The fatigue issues, muscle weakness, and medications contribute to this. I am not well off financially, and have difficulty holding a job, so you might also view me as lazy.

There are a lot of misconceptions involved with this disease and I have run into most of them. I felt very frustrated, and ashamed in the beginning, but I no longer do. I now hold my head up high and I am very proud of all that I have accomplished. Because unless I have my cane, or a brace on when you meet me, you would not even know that I am ill.

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