Sticks & Stones…..

I read an article written by a man living with severe M.E. in the Washington Post this week, talking about his desire for a child and the fact he knows that because of his illness he may never have one.  It’s not often men talk about things like this and I was deeply moved by the honesty of his piece.  I then made the mistake of reading the comments and was absolutely horrified.  He was called self indulgent, pitiful and told he was expecting a child to fulfill his emotional needs.  This twentysomething man, who was so ill for an entire year he couldn’t even eat solid food and has had every aspect of his young adult life taken away, just wanted what we all want yet was castigated for it.  Everyone who has a child has one for selfish reasons for heaven’s sake, you’re not giving birth for the emotional fulfillment of the foetus.

It made me think about all the statements which have been levelled at me during my decades of being sick, mostly by people I actually know and who should know better.  Here is a brief selection:

There are people in the world worse off than you.
My own Dad said this to me when I was unable to walk, eat or speak after having meningitis, but it’s also been levelled at me right here on my blog.  To tell someone this at their lowest ebb beggers belief, particularly when the person making the comment isn’t even sick, or has no concept what living with chronic pain for 40 years, or being bedridden for a decade without any health or social care, is like.

I don’t know how you live with it all – I know I couldn’t.
This was said to me by my Step-Dad just the other day, and although people who say this are trying to empathise it irritates the life out of me.  I don’t actually have a choice.  I either live with my diseases or I top myself.

But you’re always so happy and smiley!
The implication being that things can’t be that bad because I’m not suicidally depressed.  Little do they know that some days I am suicially depressed, but I’ve found going round admitting this to people waiting at the checkout in the supermarket is a bit of a conversation killer.

I know how you feel.
When this is said to me by another patient it’s comforting.  When it’s said to me by someone who works 40 hours a week then goes mountain climbing on a weekend I want to say “are you kidding me?!”  #nofuckingcluemate.

You live on your own so can’t be as sick as you make out.
This was levelled at me by other people with M.E. on Facebook.  All I can say to this is that doctors don’t say you might not survive the night if you’re not pretty sick.  And when you’re denied home care and your only choice is to crawl to the kitchen to make a bowl of cereal or die of starvation it’s amazing what your body can do.

I wish I were that skinny/looked that good when I’m ill.
For a whole year I was too weak to eat solid food, and there are times now when I’m so nauseous I can’t eat a damn thing, so yes I do have periods where I drop a lot of weight.  That someone would find a 6 stone (84lbs) grown woman attractive and want to be that skinny themselves appalls me.  My reply is usually “well, try being nauseous every day for 6 months and you too will drop a dress size”.

It’s nice to see you out, you must be feeling better.
I’m not sure what part of chronic, incurable disease many people fail to understand, or the fact that when you live on your own it’s impossible to be housebound for 23 years – you occasionally need to go to the cashpoint for some money, or to the chemist for a prescription no matter how horrendously ill you might be feeling, particularly when you don’t have a Carer to go for you.

But you look great!
I never know what I’m supposed to say to this.  What exactly is sick supposed to look like?  Even when I weighed 6 stones and was at death’s door I was told I looked well, and these days I wear a wig so my hair looks ‘healthy’ even though it’s actually dropping out, I wear concealer for the pain/insomnia induced dark circles under my eyes, and tinted moisturizer for my pallor, without which I look like shit but which woman wants to go round looking like shit especially when you’ve been ill for half your life?!

We’ll go when you’re feeling better.
You’ll have a long wait then.

I wish I could lounge around doing nothing all day.
This probably winds me up more than any other comment and my reply is usually “OK, I’ll swap you your husband, children, grandchildren and holiday home in Lanzarote for my 24 hours a day of pain, poverty, exhaustion, isolation and anaphylactic shock.”  #nobheads.

I’ve been amazed at the judgements made about my illnesses over the years and even more astounded that people think they have some kind of right to tell me to my face what they think about my life, like being chronically ill is some kind of career choice and if I only took their advice I could have a better, more fulfilling and worthwhile existence.  These people have no concept of the strength it takes just to get out of bed in a morning, let alone dressed or showered, and that you do it all with a smile on your face because you’re terrified that if you don’t act all happy clappy you’ll be accused of being depressed and you’ve been fighting the ‘all in your head’ stigma for the better part of 2 decades.

I won’t lie, I’ve come across some sick people on the internet who do nothing but whine and wallow in self pity and even I want to slap them and tell them to get some therapy, but for the most part chronically ill people are the strongest, most resilient, empathetic, intelligent and caring people I know and deserve a shit load more recognition for their fight than they ever receive.  Healthy people could learn a lot from them.

#wearewarriors

 

 

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9 thoughts on “Sticks & Stones…..

  1. Glo

    I understand the frustration. I have mcad and try explaining that to people. I have a mild case but took 10 years to diagnose. So I was thinking great I’m not crazy. Guess what? No one knows about it so they still think I’m crazy. At first I’d try to explain it. The looks on people’s faces told me to not bother with that anymore. I explain it as having some weird allergic reactions. Somewhat more acceptable. My pernicious anemia? People say well can’t you just take pills? Well didn’t I just explain I’m missing an intrinsic factor and can’t absorb it through my stomach? The joys of lesser known diseases! 😺 My daughter just gave up trying to explain fibromyalgia. She has good days and on bad days she stays in bed and yes gets the I wish I could just lay around in bed for a day. Sure you do! With severe joint and muscle pain unable to find a way to lay that’s not painful while experiencing depression and hey! Constant brain fog is great! We all obviously need a better advertising and promo department and maybe people would get an inkling of these things. Although probably not. But I bet if you got a reality tv show everyone would get it. Also though then everyone would claim to have it. People! I don’t get them. It’s why I work in the veterinary field. Still have to deal with people but majority of the time the animals make more sense without having to say a word.

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  2. Carmen Snip

    In a bizarre way, these horrible comments you described are a feast of recognition for me. No, it’s not funny at all. And it’s highly frustrating too, to experience how insensitive, plain stupid and judgmental people can be. It’s just that the way you write, Jak, gets me cracked up. I find you so funny. That alone makes me come back for more. 😉

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    1. Jak Post author

      Well, you gotta laugh at these idiots haven’t you Carmen? It’s either that or stab them and, tempted though I am, I shall try to restrain myself on account of the fact it would get me arrested 😉 x

      Liked by 1 person

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