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Wednesday, June 29, 2011

I am not my disease.

I am listening to the TV show ROYAL PAINS. A character is making a speech about his having MS. "I am not my disease." he proclaims. "No one is."

He is right. Of course there is so much more to us than our illnesses, or in this case, my pain.

The doctor, Dr. Hank I think he is called, tells this character, "Maybe it is not MS. It could be Lyme disease." And this man, the face of MS (for the purpose of the show) and the face of 'my disease is not me." yells at Dr. Hank. "Yes it is. I am MS. I am my disease." A very quick change of truth, or an acknowledgement of what he knows in his heart of hearts.

I do not say to someone I have just met "Hi. My name is Carol and I have chronic pain." anymore than most people would announce they have MS, or cancer, or even, unless it is an explanation about why they do not want to shake hands, a cold.

It can come up pretty quickly though. "What do you do?" "Where do you work?" Those are usually the first questions asked of someone new. A way to get to know them through their job title. And are we not described by our job titles? "I am a doctor." "I am a teacher" "I am disabled."

The first two answers tend to get an "Oh really, how interesting." The doc is asked if he has a specialty (and hopefully not can you look at this rash on my hand?"). The teacher gets the query: "What grade do you teach?" The "disabled" does not get the same interested reply. "Oh, I am so sorry." Sometimes it is the awkward "But you do not look disabled." The naming damage is done. I am not the interesting one, the creative one, the funny one. I am the disabled one.

The titles skew every relationship, at least at the beginning. The doc is treated with more respect, not because of who he is but what he is. The teacher looked at as a helper to children, someone with a definite place in the community. The disabled as someone who needs to be treated with kid gloves or sometimes just ignored or marginalized. After all what questions can you ask us? Not the same as the starting questions you ask of the professionals. "What do you do?" you can still ask me. "I make greeting cards." "I sing in the choir." I speak 7 languages (no, not me but someone.)

The pain, the disability is not me. There are times when I feel or am made to feel I have to say it louder, when it must be proclaimed: "I have a disability." "I am disabled."

Not to make it my self definition but for you to accept what I cannot do, as much as I hope you will accept all I can do. And me.


  1. I have a daughter, 37, who has Down syndrome. She is NOT the down syndrome girl, she is the adult woman with Down. I hear what you are saying.

  2. Jackie writes:

    Carol, Off-topic, but I wanted to let you know about an offensive post I just read on Kevin, MD -- a widely read blog. At least, it offended me! Summary: some people abuse pain meds, so you shouldn't have them.

    Honestly, I am so tired of these people who think they can dictate medical treatment for others -- and it's always for others, never themselves!

    Perhaps you and your readers would like to respond to this guy. Here's the link:

  3. Jackie, Thanks. I am subscribed but don't get notice to all the articles.
    Thanks I will go over and I will also post this on our
    I need to write a post today and was not sure about what, I think you may have given me my subject.
    Have a good and safe holiday.