Saturday, February 2, 2013

An Open Letter About Myasthenia Gravis

In response to a heartfelt e-mail I received, I am writing an open letter. People have misunderstood her MG and attributed her muscle weakness to laziness and being "all in her head." This is far too common and always hurtful.

Please feel free to copy and reprint it. All I ask is that you keep my name and link to the blog at the end. I hope you find it helpful.



An Open Letter to Friends and Family about Myasthenia Gravis

Dear Friends and Family,

As you know I have myasthenia gravis. MG is a rare neuromuscular disease. The word myasthenia means muscle weakness in Greek. The word Gravis means Grave in Latin. Put them together and it spells out Grave Muscle Weakness. MG causes muscle weakness throughout my body. MG isn’t an easy condition to live with. It is also difficult to explain why I can move sometimes and a few minutes later I can’t. This leads to misunderstandings that can be hurtful to me. Since I know you care about me and wouldn’t hurt me on purpose, let me take a moment to teach you about MG.

In MG, the immune system attacks and destroys critical parts of the nerve/muscle junctions. This is hard to picture, so let me give you an analogy. Imagine an old fashioned telephone, one with a base, a curly cord and a handset. When the phone rings, you pick up the handset and talk to the person on the other end of the line. Normally, everything works fine. But, what if there was a problem with the plug between the curly cord and the handset? What if, at random intervals, the curly cord fell out of the handset?

Right in the middle of talking the cord falls out and the line goes dead. The person on the other end of the phone is still speaking, but you can’t hear anything. You pick the cord up, put it back in the handset, and continue your conversation. You talk until the cord falls out again. Over and over this happens. It is frustrating. You only hear bits and pieces of what is being said. With a broken junction between the curly cord and the handset, a conversation is almost impossible.

Are you thinking you would buy a new phone? Hold that thought.

Nerves and muscles communicate in much the same way. The base of the phone is the brain. The curly cord is the nervous system. The handset is any muscle you want to move: index finger, big toe, arm. The clip where the curly cord meets the handset is the nerve/muscle junction. In your body the junctions between the nerves and muscles work properly. Mine do not.

Just like that broken phone, my nerves and muscles cannot always connect. It as if the curly cord falls out and no signal gets to my muscles. My brain is still telling my body to move, but my body cannot respond. Rest allows the connections to work for a while, but then the connection fails again. This happens to me all day every day. Until a cure is found, I have to live with a body that does not always move when I want it to. Unlike a broken telephone, I cannot get a new body.

Myasthenia gravis is a physical illness. It is not a mental disorder or something that I am faking to get attention. It is not laziness. It is not an excuse to lay in bed and do nothing, even on days when I have to stay in bed and do nothing. Some days I have more strength than others. Hot weather, an illness, PMS, stress and random reasons make MG worse.

Stress weakens my body, sometimes severely. In other words, stress makes the curly cord fall out of the handset more frequently. When someone mistakes my physical illness for a mental one it makes me feel misunderstood and sad. Sadness makes my muscles weaker. I need for you to understand that MG is not all in my head. It isn’t something I can “snap out of" or wish away.

MG can make it difficult for me to walk, talk, see, move my arms, chew, swallow, and on terrible days, breathe. MG is treatable, but it is not curable. When my body is weak the best thing for me to do is rest until I get stronger. The best thing you can do to help is understand that I am doing the best I can. MG is difficult to live with. Your support makes it easier.

I hope you understand a little better what it is like to have MG. For more information please contact the Myasthenia Gravis Foundation of Illinois http://www.myastheniagravis.org/ 800-888-6208


by Marie Smith ©2013 www.joybenchmarks.com

4 comments:

  1. Wow, thanks for sharing this! Your analogy of a phone cord falling out makes a lot of sense and really helped me understand MG better. It must be incredibly frustrating -- and people mistaking it for a mental issue, well... wow. That's just not right. But I think this explanation should make people understand a little better...it sure helped me.

    ReplyDelete
  2. Yes that explanation helps but after 20 years with MG I know that healthy people don't understand us. Even familyand it is sad.
    Yes my MG makes me frustraiting when people looked at me as I'm lazy
    Marie great blog, I feel exactly the same
    regards from Poland, Iwona

    ReplyDelete
  3. Thank you. Yes, MG is frustrating because it makes no sense, even to those of us who life with it. I hope the letter helps you.

    ReplyDelete

Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

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