degenerative disc disease, Disability, fibromyalgia, Hypermobility, Mobility Issues, My Life

Things About Having Chronic Illness That Can Be Worse Than The Illness.

fibromyalgia-awareness-day-may-symbol-purple-butterfly-ribbon-89761046

1 – The Well Meaning Person That Ends Up Mortified

There is an older lady in my local charity shop that has been there for years. I don’t know her name, but she’s always been nice and chatty whenever I go in. I lived in a different village for a while, so I didn’t get over often and she’s not seen me much until I moved back to my home town six months ago. I’ve used a walking stick for a while now, but she hadn’t seen me regularly for a long while, and yesterday, when I went to see if I could find any bargains, she asked me if my ‘injury’ would take much longer to heal. And that’s when my heart sank, and I have to do one of the worst things to do with my disability.

“It’s not an injury I’m afraid. I’ve got a medical problem, so it’s here to stay.” I reply

And of course, the nice old lady is then horrified that she asked what she thinks was a rude question. I’m not angry or upset she asked. She didn’t know. But she still feels bad, and I feel bad that she feels bad. I don’t mind people asking about my disability, the more people I tell about what is wrong and what I go through, the more people might actually be more accepting or sympathetic towards differently abled people, and more importantly, they may realise that I am still a person like anyone else despite my problems. But in cases like this, it can be awkward. I don’t want the person asking to feel like they have done something bad. I could have lied and said my ‘injury’ would heal soon, but I’d be facing the conversation further down the line.
2) “Hi! Did you know that my *insert product here* totally cures your illness?”

Another part of being disabled I find harder to stomach than my actual illness is the well-meaning ‘helpful’ comments and information I inevitably get.

33323810_10156534657713628_1065467702648242176_n
I wish that this wasn’t actually accurate.

Diet supplements, Yoga, herbal remedies… you name it, I have been told that it will miraculously cure me. I’m willing to give anything a try, but usually these ‘miracle cures’ come with a miraculous price tag to boot.

Not everyone is being malicious when sending me these things. Fibromyalgia isn’t very well understood, even now. Hell, it’s not even really known what causes it. So maybe someone did try something and it really did help. It doesn’t mean it will definitely work for everyone else. And even if my Fibro WAS cured, the Hypermobility and the Disc Disease would still be there.

Of course, there are dishonest people trying to peddle me snake oil, and prey on desperate people. May these people eternally encounter Lego when barefoot.
3) The Overly Helpful

This may sound unkind, but whilst I do require help at times, and it’s infinitely better than having someone who doesn’t help you at all, but wow….

There are things I can’t do. I acknowledge that, and I am ever so grateful when some nice person helps me. I can’t carry huge loads, so as much as I’d love to carry the round of drinks I just bought for my friends to the table by myself, I can’t, so it’s nice if someone helps me carry them, as my friends unerringly manage to pick the table that’s the furthest away from the bar, and more than one trip would be a pain in the hip.

Last year I went to a marketing seminar run by a local radio station. I have a ‘thing’ about being late for things, so as usual, I turned up 10 minutes before anyone else. So I set about getting myself a cup of tea and settle myself at a table before the rush. There was a very nice gentleman that fussed around me the moment I approached the Tea table. He made me a cup of tea. He carried it over to the table I was going to sit at. He came back a few minutes later to see if I needed more tea. Another few minutes later, he came to see if I needed a biscuit. Then he asked if I needed more Tea… And so on, until the presentation (where he turned out to be the managing director of the station). I’m also pretty sure he rigged my winning of the raffle, but I’m not going to be too angry about free cake and a bottle of prosecco.

What I am trying to say is that whilst it’s nice that people help me, sometimes people just go too damn far. Please, let me retain the little bit of independence I have for now. Unless you are giving me free prosecco. I’ll be as useless as you like for that. (My pride has limits).
4) The One Religious Phrase Guaranteed to Send Me into Frothing Rage.

I’m somewhere between Agnostic and Pagan (it’s way too complicated to go into here). I’ve no problem with any religion, and if that’s what gets you through the day, then great! But the next time I hear this one particular phrase, I will not be responsible for my actions.

“God never gives you more than you can handle”

Right. I am probably on the autism spectrum, so my childhood was… interesting. I cared for my disabled mother from the age of 10, for which I was bullied mercilessly. My first real relationship was abusive, and I was sexually assaulted aged 17 by the boss of my first ever job during the abuse. It gave me the PTSD I still struggle with today. My first husband developed schizophrenia, so I ended up caring for him, and my own health started to go downhill. Eventually, that marriage broke down, and I met G, and things finally seemed to be picking up, until my health deteriorated to the point I am now disabled, costing me the job I loved. If God never gives people more than they can handle, then he is really misjudging me.

I. Cannot. Handle. Anymore.

Hell, a fair chunk of the time I am not handling it, I’m a blubbing mess on the sofa wondering when it will all end. Luckily those episodes are few and far between, and I am a happy, cheerful person who just happens to be disabled.

Please, please, PLEASE think before you say that line to anyone. Because whilst you may think that it is helpful and inspiring, it is not. If you are struggling, it doesn’t help to hear that it’s ok, God thinks you can handle it.

If you made it this far through this post, then thank you. You are Awesome!

Youre-Awesome-Purple-Glitter

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.