Wednesday, April 3, 2013

Health Activist Writer's Month Challenge Day 1

I have just joined the Health Activist Writer’s Month Challenge, and despite being currently very sick I am taking the challenge on writing daily in April about my disease, myalgic encephalomyelitis (I will call it ME) also known as chronic fatigue syndrome (CFS)

For those of you who would also like to join here is the link to their Facebook page.

While I am a rookie at writer's challenges, I have been blogging about my health journey and also about advocacy and "bed activism" almost from the time I got sick with ME. 

Writing about this disease makes us the patients less invisible. See, there are millions of us confined to the walls of our houses, left behind by society and even family and friends. We have the stigma of laziness and sloth. People think we have an imaginary illness, that we don't want to work. 

Just this week a cardiologist talked about abuse of disability benefits and targetted diseases like ME and CFS and fibromyalgia as "excuses" patients gave to get disability. How ignorant, how insulting and how stupid. 

The truth is you don't want me to be your nurse. (I was a chemo nurse) I make medication errors on myself. I sometimes find my car keys in the fridge. These days it just feels I've been hit in the back of my head by a baseball bat. Doing calculations throws me in relapse mode. Sunlight and noise makes me want to crawl back to my bed and pullthe covers over my head. 

There is so much stigma attached to this illness; most physicians don't even know this is a real illness. Governments think it must not be that bad, hey, for the most part parents of young children have chronic fatigue. But chronic fatigue is to chronic fatigue syndrome what a match is to the atomic bomb. This comes from Laura Hillenbrand, who is also sick with the disease, author of Seabiscuit. 

So I am writing for awareness. I am writing for legitimacy and social justice. 

My hope is that people outside the ME community reads what I got to say this month. Let me know you're here. 


  1. I understand. I wish you the best in this. It took me a long time to come out of the closet in print because I didn't want ME/CFS to define me. But then I realized that I had to accept and acknowledge this part of me. And I had to confront the shame of it. This is not who I am, this is just what I have.

    Oh and I liked your "The truth is you don't want me to be your nurse." statement. I ask physicians " Would you trust any drug recommendations from me?" I used to work as a pharm rep.

  2. Hi Colin, thank you so much for your comments. And indeed, we should not feel ashamed of having ME but so much work needs to be done to lift the stigma

    Recently a friend with ME needed surgery for a cancer scare,and she made sure that she did not mentioned ME or CFS- and she was treated with so much respect, it was really noticeable according to her. There is much difference in attitude and treatment if you mention the disease to the health care provider. Sad, but true.

    thank you so much for reading writing, much appreciated!