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Guest Blog MEA: The Shame

Discussion in 'General ME/CFS news' started by Sly Saint, Jun 22, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    And there it is in a nutshell.

    Pacing, however well you manage it isn't a cure. It simply stops you feeling worse. It may, if the stars align with everything else that affects us from temperature, levels of light & sound, allergies and so on, permit a brief lessening of symptoms that feels wonderful and dangerous.

    As soon as we make use of that little window - we go mad and have a shower or stand while we brush our teeth - the rug is pulled from under us and the next PEM tide closes over our heads. Then we blame ourselves.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Personally I'm not ashamed, I just know this is something that may make other people hurt me if I mention it. So I don't. Not out of shame, but because it is used to hurt me, including by people who can exert enormous power over my life. Definitely more annoyance than shame, but I basically don't interact with other people anymore so that kind of solves that for the most part.

    I'm not sure there's a real difference in outcome here, though.
  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    I'm not now, maybe shame is a bit strong but I was definitely a bit embarrassed by it when I first became ill and it dawned that people now looked at me like a was pond life - sometimes people I had bailed out of trouble of their own making too.

    Then having had people behave aggressively towards me I just avoided mention of it unless I was in the mood to sort them out if they started. Sometimes I don't want to spend the rare occasion I get to talk to another human talking about something that affects every second of my life - it's nice to take a little break & have a distraction.

    The end result is the same though. I don't discuss having ME as much because of how others react as due to my choice.
  5. Mij

    Mij Senior Member (Voting Rights)

    Wow, I talked about ME for 7 years straight to anyone who would listen, and then realized no one was interested so I stopped.
  6. Leila

    Leila Senior Member (Voting Rights)

    I am ashamed, still. Because being moderately affected puts you in that weird middle space between people seeing snippets of the seemingly normal outside-you and the terribly sick crash/PENE inside you.

    (Needless to say I'm glad for every inch of health I do have left).

    One of my dreaded conversations:

    Person: "What do you do for a living?".

    Me: "I dont work".

    - Akward silence.


    Person: "What do you do for a living"

    Me: I cant work due to chronic illness.

    Person: Immediately looking up and down my body in search of a missing limb or god knows what.

    - Akward silence.

    What to do with that silence? Then people ask about hobbies, travelling, family. I can't relate. I'm not part of that world.

    So I ask questions in return, listen etc. But "hiding" without lying is so stressful and exhausting that it's hard to enjoy the social interaction I crave so much.
  7. alktipping

    alktipping Senior Member (Voting Rights)

    i have not interacted personally with anyone outside of my family in 16 years but when i was going out and inevitably talking to people i felt no shame or embarrassment mentioning m e if they were ignorant of the true nature of this disease i saw that as their problem not mine . i have never understood the attitudes of many people who think sick or disabled people are somehow inferior to those who through sheer luck happen to be in good health . considering that at least 20% of humanity has some kind of long term health problem you would think illness would have greater recognition as a burden for those who endure .
    Mij, Helene, EzzieD and 17 others like this.
  8. Sean

    Sean Moderator Staff Member

  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Fantastic description. "The next PEM tide closes over our heads", is so descriptive of the feeling. The inevitability of a crash as the symptoms get worse. Of having no other choice but to spend a lot time supine.

    Pacing, the only thing we've got is such a fragile preventive. Like balancing on a tight rope. One false move, in the case of ME one small normal activity, and we may slip off that thin rope.
  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Hiding in plain sight.

    I used to think people would think I was a slacker because I might have been out and about on a weekday afternoon. Then I told myself I could as easily be a shift worker, so not to care about what they think.

    I agree, @Leila ME is the elephant in the room in social interactions. "What do you do?" A dreaded question. It feels like verbal dodge ball.
  11. TiredSam

    TiredSam Moderator Staff Member

    From the article:

    I was disappointed when I found out that the cyst in my pituitary gland wasn't a brain tumour or causing any problems and wouldn't have to be removed by opening up my face with an X% chance of success. I think I was rather looking forward to it. Anything to stop the first few months of ME.


    I have recently blamed myself for trying to play the piano for 5 minutes a day, which led to a couple of weeks of the old symptoms. Why couldn't I just be happy with what I've got? Then again I patted myself on the back for recognising what was happening and stopping it, so all's well.

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