An excellent story to help the able bodied understand disabilities, it was sent in for the competition but i feel it was more for awareness. if one person can learn from this, it was worth the effort. (good story).
The majority of illnesses are invisible. I fall into this category. I have Fibromyalgia, M.E/CFS, and all the threads that come with it. I also have Osteo Arthritis and a stomach and bowel condition. (You can work out the symptoms of that yourself. I doubt you need me to go into gory detail) I have a neurology condition called NEAD and social & diagnosed mental health issues though they are more managed today than they manage me.
I am on 15 tablets a DAY plus up to 8 painkillers, yet I look so well, there can’t be anything wrong with me! My 2nd son also has bipolar and the same stomach and bowel condition has me. My Husband is also disabled, in many ways worse than me. Yes I do have 3 members of my immediate family who are in good health. They are 3 of my grown youngsters, who all work, before someone starts calling us stereo type typical family of scroungers.
So where shall I start first? At those who think we are welfare scroungers? At those who think there is nothing wrong with us because we look O.K on the surface. ‘If I ever hear but you look fine to me’ again I swear I will scream in there face. It was known once for me to turn round to someone and say, after I got the ‘but you look so well’ for me to retort ’‘and you don’t look stupid…………..’ Yes they did look shocked.
People don’t see me/us at home and what it is really like. How the CFS means I can sleep 24/7 and still feel exhausted. How it takes me longer to do daily activities others take for granted, from getting up in the morning, to showering, dressing, preparing food, moving around, with mobility issues, the risk of falls and stumbles, dropping things, ad infinitum. It is only when I sit down and think about these things, I realise, how downhill I have gone, as I didn’t take wake up one morning like this. We covertly adjust with time to the way we are.
Oh I only started using a stick a few years ago as someone I didn’t even know asked me if I was drunk at 12-am in the day cos I was weaving when I walk (I also have balance issues and a curvature of the spine) Needless to say my reply was pretty sharp and along the lines ‘I don’t ***** drink and what business is it of yours’ Worse thing you can say to someone like me in long term recovery. Now coming up to 12 years sober.
Oh but I hear you say how many of those issues were bought about by drink? I have had that 1 too. Actually in the words of our family GP, there weren’t. My drinking was dysfunctional over 3 years and I was an evening drinker (do you know the stats for dysfunctional drinking? 1 in 13 people do, maybe less, as this was the last stats available)
Actually I have had an extremely dysfunctional life, where all that glittered wasn’t gold, from a childhood I recreated in adult, finally escaped and went through hell with the aftermath. Also I was blessed to get off the bandwagon early as soon as I realised my drinking was becoming a problem.
I am fed up of the stereo types, of the government feeding the media that the disabled are all scroungers. I am sick of the media sensationalism on TV of those who really are using the system, in such programs like Benefits Street, which is designed for affect. The people who go on it are the ‘’stereo type’’ and don’t realise how it will affect them either, as 1 member of benefit street recently said, that they were portrayed completely wrongly, with editing etc.
I am NOT better off on benefits. My Husband, my 2nd son and I earning capacity far exceeds what we get, though I appreciate what we do get.
Walk a day in my shoes for a day- You would want out of it in less than 5 minutes.
Now for my Husband and son: My Husband like me looks O.K. In some ways is worse than me (incidentally he takes 19 tablets a day plus his insulin plus any additional pain killers) He is worse off because he is diabetic and because of that, his immune system is lower and more open to illnesses.
My 2nd son was diagnosed with bipolar 4 years ago after years of extremely, strange, peculiar behaviour. Now bipolar (manic depression) is not a little bit of depression, as someone once said to me (yes they are still living) Bipolar is an extremely debilitating illness that means the person has dependencies. He is a classed as a vulnerable adult, who we nearly lost (to death yes) to get a diagnosis and he will live with this for the rest of his life.
Bipolar affects every part of his life, even when he is relatively (for a person with bipolar, not your idea of stable) stable. It affects his thinking, people with bipolar do not have the same thought process has us, it affects his daily life, and his way of inter acting with the world.
This is just a brief on our disabilities, so the next time someone says they are disabled don’t judge a book by its cover. Never say to anyone, but you look so well: Don’t judge a book by its cover.
You have no idea what someone goes through that is unseen: You have no idea of another person journey. How would you feel if it was you?
Whilst we on the subject, of how disability affects people, I have a friend who is in a wheelchair: The worse thing for her, is people ignore her and talk to the person with her as if she is a vegetable/not there. She isn’t a vegetable. Just because you see a chair doesn’t mean the person isn’t able to talk, make decisions and do for themselves, with support. Talk with her, not just the person with her.
The worst thing she had said to her when she was out on her own in her electric chair was a teacher (yes you read that right) telling the youngsters, who were on a trip, to mind the chair, coming. Can you imagine how my friend felt at that?
I may too end up in a wheelchair in my old age, though it will be kicking and screaming, I will still be me. My late Mom was diagnosed with dementia and we nursed her until the end. I would rather be in a wheelchair as i would still be me, than like my Mom was.
I could give you many stories of judging we have had, as people, disabled, though mobile, also, however I think you get the gist. Maybe I should write a book! Now there’s a thought. I bet the doubters wonder how I am able to type a true story if I suffer with so much pain: Do you know how long, it has taken me to write it? No! You only think in the box, not out of the box.
I will pop in 1 story that happened to me, just as an example of me as a person disabled though mobile: I was on a bus going into town. My sticks were out of sight to the side of me. The bus was full. The woman sat in front of me, you could see was disabled. We were both in the only disabled seats on the bus.
Two older women got on the bus (who looked fit and didn’t say otherwise) and started moaning about people taking up seats they weren’t entitled too and they should have a seat as they were pensioners. After a while I asked the women if they were referring to us. The woman in front of me, said look ‘I can’t stand because’ and they said ‘oh we can see your disabled’ I said ‘so you mean me then?’ I pulled out my bus pass and started to list my disabilities, finishing with ‘don’t judge a book by its cover’ they both went deathly quiet.
We won’t even go there, over the blue badge, which we have often had looks for using. I do wish people realised that for everything we get help with, we have to go through medicals and assessments, whether it be for benefit help or other services. Contrary to popular belief it is not easy to get the help, we need.
The next time you read in the paper that someone is getting disability for insomnia, just remember that it isn’t just for insomnia. It is only a sensationalist headline. My son can go days without sleeping when he is manic with his bipolar. It is just one part of the illness. The full story isn’t a headline.
So the next time you see someone acting peculiarly, don’t judge, don’t stare, and don’t be scornful or try to not have any other thoughts that are negative. Think, think, think and learn to treat people how you would like to be treated.
I shouldn’t need to defend myself, or others, I shouldn’t need to explain myself, to the outside world. It is no one business accept ours and the services we answer too, to get help, yet sometimes when I am feeling more vulnerable than usual I feel I have too, hence this article.
I have briefly covered some of the issues of people I know and my own family: Some of you may see it as a rant, some as sarcasm, or any other thoughts you may have. Remember all disabilities have more than 1 layer to them. It isn’t just CFS/Diabetic for examples. It is how they affect that person life and what other illnesses they have which entwine to make the disabilities multiple and make the person health worse.
My humour is dark, so yes this is some underlying annoyance, tinged with dark humour as we have to keep our humour as it is the only way to live life a day at a time.
This is a snapshot of my life and others: Want to swap with us any able bodied person? Awaits the rush of yeses I can’t quite hear! Hmm perhaps I now need a hearing test
This isn’t a choice of life, for anyone who is disabled in anyway, whether it be physically, mentally or both.
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