Having ME/CFS is humiliating

It’s bad enough having all this crap wrong with us, being knackered and in pain all the sodding time while still managing to look the picture of health, people don’t think there’s anything wrong with you and that you’re making a mountain out of a molehill.

We get the ‘look’ a lot from family, friends and colleagues; the look that screams at you that you’re just lazy, that you’re milking it so you don’t have to do X, Y or Z.

The look that says you’re a failure. that you don’t try hard enough to beat the condition, that you give in too easily, that you don’t do enough full stop.

Feeling that kind of unspoken pressure and budding resentment all the time is demoralising because it’s having your own thoughts thrown back in your face a hundred times over.

But that’s not the humiliating thing.

No, what’s humiliating is trying to live a normal life, trying to do it all and succeeding so well in the appearance of this that when you crash in class/ at work from pushing yourself so hard, you’re met with confusion, embarrasment and a feeling of complete and utter alienation.

Today was one such day for me.

I was sat in my PAWS class and I could feel a crash coming on, I’d managed to shut down the laptop and was attempting to pack up my gear in a race against time.

..but it was fairly obvious I wouldn’t make it, not without leaving the laptop and that wasn’t an option as I can’t afford to replace it.

To make matters worse as everyone started heading out to get to the labs for our next tutorial, a classmate made her way over to talk to me and I didn’t have the energy to respond, I just rested my head on the table and prayed that she’d shut up and leave me alone.

I was not to be so lucky, she started badgering me and then at my lack of response began asking if I needed a doctor or the medical center.. I responded NO.

(single syllable words are the limit when the fatigue hits, and only for a few minutes before even they deteriorate into grunts and sniffles)

She kept asking me and asking me – I managed to get out the phrase ‘I have M.E’ so she then started calling back all the guys into the room – all I wanted was the ground to open up and swallow me.

I knew the room was timetabled for us for another hour, I knew the crash wouldn’t last that long if I could keep calm and just go with it; unfortunately she didn’t.

I’m there slumped against the table, struggling against the tears of embarrassment and frustration leaking down my cheeks and dripping uncomfortably from the end of my nose and she’s doing everything in her power to draw attention to me.

“She says she has M.E do you know what M.E is? Vicky, what is M.E? Vicky? Vicky? talk to me, do you need a Dr? Do you want me to take you home?”

And this went on and on until I could force out another “NO, leaf ‘lone” which completely exhausted me.

I could hear the embarrassed shuffling and the muffled commenting amongst the lads, finally one of ’em said “she wants to be left alone.. c’mon we should go” and to my relief, they left.

..The though of having to be in the same room as them all tomorrow fills me with dread, I know the lass will demand a big explanation from me and she’s the type to do so in the middle of a crowded room at full volume – this means even the guys NOT privy to my embarrassing physical breakdown will hear about it.

Oh the joys.

..But even that isn’t the worst part. The worst part was realising that I was alone, unable to move even my eyelids in a place my other half would have no clue to find me and that the people who had left me would not even think to tell someone where I was who could check my records for instructions on what to do for me.

If I could have said, “yes please take me home” to the lass, it still would not have made it happen.

I had a heavy laptop bag and I weigh just over 10 stone – all of which would have been dead weight as I was completely immobile; so how was this tiny lass to carry me and my bag down a flight of stairs and across campus, manhandle me into and out of her car to get me home?

I couldn’t even leave my chair and lie down without being assisted and I didn’t have the strength to ask for the help.

I had to stay in that awkward uncomfortable slumped position with the sun streaming directly onto the side of my face, listening to the comments about me from the people walking past the room laughing at the girl who’d ‘fallen asleep’ ‘had a rough night’ and just pray for the heaviness of the accompanying brainfog to drown out my humiliation and helplessness until the whole episode passed and I could summon the energy to get home.

I was there for 45 minutes.

The usual 10 minute walk home was a 20 minute stumble and I’ve spent the rest of the day in bed completely wasted from the effort of getting home with my bag.

So when people say that ME/CFS is ‘all in your head’ they’re right.

It’s in my head that for 24/7, 365 days of the year no matter what I do I can’t control what happens with my body.

No matter how healthy I look on the outside, in my head I’m worrying about days like today, days when I can’t hide that there is something wrong with me, days when I am at the mercy of every other human around me.

Days like today are the reason I have to force myself to leave the house and get on with things instead of hiding in my room like a hermit.

If I could get THAT out of my head I’d probably be a much happier individual as would every other person I know who suffers from this fucking illness.

2 thoughts on “Having ME/CFS is humiliating

  1. V

    Thanks for sharing this with us.

    Most of us know so little about ME, we’d love to help or at least make you (the overall M.E. sufferer “you” since I’ve never been around when you’ve had a rough patch) more comfortable.

    While I appreciate it’s embarrassing to get people quizzing you, I would love for someone to take the time to explain to me what happens and how we can lend a hand – even if it’s just letting someone know you’re having a bit of a break in a certain room and to check up you’re ok in half an hour.

    Someone (who for all intents and purposes looked perfectly “well” and “normal” to me from the outside) kindly sat down one night and gave me some insight into the challenges he faced with autism; the daily need for his trusted stuffed lion as moral support, the case where he lost the ability to speak for 6 months, etc.

    It’s impossible to educate everyone, and I understand that there will always be complete tits who don’t understand and will mock (but then, you can be “normal” and just short/tall/ginger/skinny/fat and people will find something to mock). However, for the rest of us, we’ll hopefully feel a bit less helpless next time you need to put your head down and take a breather to regain control.

    What do you think?

    – V

  2. Vics Post author

    Aye, I agree completely with the need to tell people about the problems that come with having a condition of any kind.
    The problem is; when and how do you tell them?

    I do write on my various blogs about it and you’ve seen the (sadly frequent) complaints about #cfs on my twitter stream; but the only people I TALK to about this are my best friend and my partner (and the one interview I did for Sean http://rosevibe.me.uk/blog/2007/09/02/the-me-interview/ )

    Telling complete strangers on my course means having to ‘make a big thing’ and basically force the knowledge upon them, which basically sucks.

    If you feel like a complete freak you don’t want to advertise it when you can see the reactions – online isn’t so bad but in person.. Scary.

    I’ve had enough family members treat me with disdain and call me a workshy lazy liar (it’s all in my head etc etc) putting myself out there for other people to do the same..
    ..It’s hard.


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