Guest Blog MEA: The Shame

Sly Saint

Sly Saint

Senior Member (Voting Rights)
I’m ashamed to say I have M.E.

I’ve collapsed in the street and when I’ve managed to explain that I don’t need an ambulance, it’s just M.E, I see the compassion disappear. As if I’ve said, don’t worry, I just want the attention.

My M.E. isn’t that bad anymore. I’m not always bedbound. It’s been 27 years so I don’t really know what being normal is supposed to feel like. But now I can disguise how I am feeling.

On good days I can walk around a shop and buy food as long as I don’t carry a heavy shopping basket or stand in a queue. I can walk slightly further to the non-disabled parking bay because if I use my blue badge to park in the disabled space I’ll worry that someone will see me walking and judge me harshly.

I drive home and then sit in the car pretending to be busy so I don’t have to talk to my neighbour because talking and standing will wipe out the next two days. They’ll also wonder why I’ve gone from seemingly normal to holding onto the fence and walking like a spaceman.

If I’m on a bus and a person with a pram is getting off at the same time, I wait until the next stop, or hide behind other passengers, so I don’t have to look like a selfish person for not helping. I never sit in the priority seats in case I’m asked to move for a person who’s visibly in need. Mostly I avoid buses.

I’m entitled to having a Disabled parking bay outside my home, but my neighbours would know I was ill and question why I seemed perfectly fine walking the dogs the other day.

I suspect one of my neighbours knows because she no longer asks, “How are you today?” she asks, “How’s your health doing?” I don’t even like sympathetic people because it puts me on the spot and there’s never an easy explanation.
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https://meassociation.org.uk/2021/06/guest-blog-the-shame/
 
I never blame M.E. for making me feel ill, I always blame myself. I blame myself for putting away the washing, for texting too much, for standing in the shower, for taking jeans out of the wardrobe, for lifting a heavy shoe, for reading, for writing this…
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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.
 
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.
 
rvallee said:
Personally I'm not ashamed,
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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.
 
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.

Or:

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.
 
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 .
 
Invisible Woman said:
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.
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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.
 
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.
 
From the article:

I was checked out for Multiple Sclerosis. I was disappointed not to have it.
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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.

rvallee said:
but I basically don't interact with other people anymore so that kind of solves that for the most part.
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Yup.

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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