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Monday, February 20, 2012


As I wrote the last post, listing my surgical history, I started thinking about my family's attitude and behavior, as well as what other people have often said in various pain support groups.

How can someone not believe you when you have had 12 brain surgeries? How can a sister see you bald (they took all my hair for the first operation) disfigured, or have trouble walking and say, 'There is nothing wrong with you, you're making it up."?

How can someone look at someone they know/love and see the black and blue and swelling of, say, CRPS, (chronic regional pain syndrome) and say "You are perfectly fine. There is nothing wrong with you"?

I wish I knew. Don't you wish I was able to answer that? Me too. I cannot. It is bizarre to me.

On the one hand I do get it, at least at the beginning. Pain is invisible.

I say to you "I have pain that will not go away. I am housebound and cannot work. It has made me afraid, in the case of trigeminal neuralgia, of washing my face, going out in a light breeze, or the cold, or wind." You look at me and go "oooookay." And roll your eyes.

I remember a woman who was at the pain clinic at the same time I was, in 1980.

A statue fell on her foot. Within a short period of time she had bodywide severe pain, even trouble with incontinence. No doctor believed her. My impression at the time was that she was there so they could help her realize her pain and other issues were psychological. I listened to her and even though I was disbelieved at the start, and knew how that felt, I thought it was probably psychological. It just did not sound like something...real. If she had waited until about 1986 she would have had a better chance of being believed as the symptoms of CRPS (then called RSD) became acknowledged as a real pain syndrome and disorder.

On the other hand, Dr. House, on the TV show, said 'I act this way "between arrogant and unhinged" because I am in pain 24 hours a day, from severe to untenable.

Is this what is expected? Those of us in debilitating pain have to behave in a specific way in order to be believed. If we are not screaming in pain, how bad can it be? But if you are screaming in pain continuously chances are good you will be seen as a 'nut'. I daresay for many of us, behaving "arrogant to unhinged' would only further the disbelief.

My father said to me, more then once, "I see your read so I know you can read." negating any middle ground. No other disease I can think of offhand (and I am not including psychiatric disorders here) requires a middle ground, requires a leap of faith for those around us to accept our pain and disability.

What do we need to do? We need to accept the limitations of our loved ones, friends, colleagues, even acquaintances. Even when they refuse to accept ours.


  1. I have the same problem with my husband. He thinks post-exertional malaise (from chronic fatigue syndrome) is just because I'm not exercising. The doctor told me exercising will make me worse, but I can't get my husband on board with this and it is SO frustrating. I don't want to scream about my symptoms constantly, but how else are we going to get them to believe us??? It's awful. Sometimes I'd rather have something that people can see. At least then, they will agree that you have a problem.


  2. Hey Chelle,
    Has he been to the doc with you or talked to him? It is a catch 22 if we are silent we are not believed but if we scream constantly then a lot of times it is seen as manipulative or malingering.
    I agree with you. I have to say it is the one 'benefit' of the facial paralysis and that my left eyelids are often swollen. People may not know even of the pain but they say "are you allright" etc. The down side is that it becoes a stick and people say your eye looks good today so you must be doing well. The irony is the worse the pain the better, for some reason, my eye looks because it opens more.
    I think, unfortunately the invisibility means we do have to fight a lot more and harder to get the belief, help, compassion, and understanding that many other diseases get automkatically because they are visible or at least understood. big hug back, Carol

  3. Hi

    Re the post-exertional malaise from CFS that Chelle mentioned above: there is a story on today's WSJ Health Blog that I think might be relevant. Hope so ...


  4. I suffer from severe fibromyalgia, and I can tell you that I struggle with my family constantly. To them, my pain is invisible. And at times, their patience with me is so thin that they accuse me of making everything up. I am not making up this pain! Why would I? Thank you for posting this. I did find some good information at that talks about the emotional ramifications of being a chronic pain sufferer. But it's still not easy when people refuse to believe you.

  5. Thanks for the links both of you.
    I hope you will consider joining the FB women in pain awareness group and bring the info to us there.
    Janice it is the invisibility that is a big barrier although when you think about it most diseases/disorders are invisible so what makes this different. I think that it is pain, chronic, and misunderstood as a disorder in itself.


    This is the women in pain awareness fb addrress.