Not your teachable moment

Where to begin? It begins, I suppose, with me. And why I’m even doing this. So, as the King of Hearts says, let us “begin at the beginning.”

There are several important things to know about me to understand any of this:

I have what has been termed an autoimmune condition. It manifests as what looks like chicken pox on my arms and legs. I also get nerve pain flares in my legs. This is the fourth most important thing to know about me.

Yes, I have been to the doctor. Several, even. The Gregory Houses of UCI, UCLA, Scripps Institute, Baylor College of Medicine and the Royal College of Medicine in London have all stared at various portions of my anatomy. I have even been written up as a case study in an issue of JAMA (and no, I am NOT telling you which one, you lil’ perv). Every last one has told me they got nuttin’, honey. This is the third most important thing to know about me.

No, I am not contagious. I do not have AIDS, the mumps, the measles, chicken pox, or whatever that mysterious thing was that your cousin’s best friend’s roommate had 13 years ago for one summer.  Beyond that, my medical history is not your business. Go Google for HIPAA if you don’t believe me. This is the second most important thing to know about me.

I am not your teachable moment. I am not obligated to tell you my life story, serve as some sort of role model for visible disabilities, or be cheerful and brave. I am not an object of your pity, your scorn or your circus-freak curiosity. This is the MOST important thing to know about me.

Sometimes I get angry at a body that has betrayed me. Sometimes I weep with rage for what it has taken from me. And sometimes, I smack people on the snout when they can’t see beyond that to the person I am.

This is a dark and bumpy ride. Keep all arms and legs inside the vehicle until it comes to a complete stop.

Thank you and have a day.

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This entry was posted in chronic pain, not your teachable moment, visible disability and tagged , , . Bookmark the permalink.

8 Responses to Not your teachable moment

  1. Faith Wallis says:

    +1.

    So so so +1.

  2. Doug Jones says:

    Ya know, the first time I met you I just sorta shrugged, thought “must be some sorta skin problem, none of my business,” and ignored it. I really don’t understand so many people getting wrapped around the axle about it.

  3. (Tassie_Gal) says:

    Love it.

  4. Madshutterbug says:

    Leaving some love here. Because.

    Because I’m not doing as much real travel these days. Because it’s been too long since we’ve actually seen each other. Because I can appreciate a good snout-smacking.

  5. guruwench says:

    Very well said, and go you. 🙂 When I met you, I had read some of your commentary about the problems you’ve had with your skin condition, so I knew that you’ve been given grief by nutbars who get too nosy for their own good. I didn’t see what was the big deal when I met you, though, and also do not understand why some folks get so upset.

  6. Lisa Harrigan says:

    I think we talked about it once. You explained you and I nodded, hoping to understand and be supportive and not rude. And then it became a non-issue in the relationship.
    You aren’t the only friend with a weird skin condition. Heck, the hubby has a weird skin condition, two in fact, which may or may not be related. All anyone can do is verify, “No it is not contagious. Find medications that work, or don’t. And some times, rarely, get a good diagnosis of what is going on.”
    Willing to give hugs, early and often. And also willing to be an ear you can bend when you are having a rough day.

  7. Pau Amma says:

    Mentioned the blog in an IRC channeI where I think a large share of regulars will be interested.

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