Sue Marsh: it has taken me until today to write a comment on this. You had me full on wailing and in tears yesterday. I wish I could show this and your previous post and have my brother read and understand them. Let me explain myself.
I am the youngest of five children. In my Family it goes girl boy girl boy girl. We have both parents still together and we where brought up in an incredibly liberal household to the point where my Dad actually ran for local councillor as a Liberal Democrat and the local Mayor who was a great family friend and always at our house was also a Lib Dem. Now the eldest of my brothers is now a Tory. He grew up in the thatcher era and he agrees with so many tory principles.
Since I was very young I had problems with my joints, I had many dislocations. Earlier this year I was finally diagnosed with a rare type of hyper-mobility which is considdered very severe and degenerative. It took until I was unable to walk unassisted and was mostly in a wheel chair to get this diagnosis. I am also over weight because I have PCOS and even after dieting for a year when I was 17 on less than 100 calories a day I did not lose weight (I in fact gained 8st that year). I also suffer from M.E. and have some kind of immune system problem which means I pick up viruses and infections easily but the doctors don't know what it is. I have been seeing consultants and doctors for various years and have finally started to get answers as to what is wrong with me.
Having a disability is incredibly difficult as you appreciate yourself. Any kind of illness is difficult when it is long term. My doctors have advised that I don't work despite the fact that I want to and thus I am stuck at home every day bored out my mind with a degree I can't use.
My brother has torn my entire family in two to the point where both my sisters look down on me and I am not allowed to see any of my nieces or nephews. This is because my brother refuses to acknowledge the fact that I am disabled or sick at all. My brothers oppinion is that I am fat and lazy and that is entirely the only things wrong with me. My own brother actually sent a message to my husband on facebook bad mouthing me and saying that I am lazy and fat, not ill and just stealing and scrounging from the government.
This same brother knew I had tried to start a business from home, he knew I struggled to finish my degree, he knows that I have been ill for years and have done my best to fight against it. But because newspapers and the PM say that people who are disabled are scroungers and steal money then I must be. And because some people fake disabilities he assumes that I must too even though the evidence to the contrary is right in front of him every time he sees me. He seems to think we are rolling in tax payers money, that we are some how really rich off the money he earns. He doesn't realise just how dire things are. He sees that every now and then my Dad just gives me £100 but he doesn't realise this is because we haven't eaten for two days because the bills went up again and we couldn't afford them and food or we helped out a friend who was worse off. My Dad is a catholic and he is happy to give me £100 every now and then because he knows that even if I have nothing I will still be helping other people to the best of my ability with it. My brother doesn't understand why I got £150 'for a meal out' for my birthday from my parents because that was a meal out and two weeks worth of shopping and my parents understood that it would make things vastly easier for us.
He also thinks that I am lying when I say that I am being victimised by my upstairs neighbours because of my disability. He has never lived in a council house and thus been trapped because he owes the housing association money and there is no where else for you to live. He is able to get a mortgage and buy a house and I cannot and he also thinks that council houses are like nice little communities where everyone gets on and its an idyl paid for by tax payers. He wasn't here all the times the police where here because my neighbour threatened to kill me and tried to kick my door down while holding a knife with a get away car running and waiting for her. He wasn't there when the police said they couldn't help us and he doesn't understand when I say I am too afraid to go out side. He thinks I am being lazy.
Despite having so much right in front of him showing him my disability he refuses to believe that I am anything other than a scrounger who lives in a tax paid for idyl. He has disowned me, cut me from his life and wont even let me send birthday cards to my nephews and nieces. I cannot change his mind, even if I show him your articles because he will think you are a liar too with an imaginary disease even though you are not. He can't see what is infront of him. People like him are blind and it makes me so sad, even my own brother who was brought up liberal refuses to see how desperate my life is, how desperate life is for everyone who is disabled. He thinks we live in palaces watching sky tv, kickig our heels back eating caviar paid for by him working. Nothing can change anyones mind about this but this is reality for us, we are looked down on for being disabled every day, even by people who should know better.
It has broken my heart. You share the reality of what we go through but it feels like we are all banging our heads against brick walls because no one is listening or they turn their heads, the ones who are blind do anyway. I want to kick and scream and cry because half of my own family hate me because they can't see the truth. Even if I show them the truth written by you Sue it wouldn't make a blind bit of difference. Ignorance has always made me sad, especially what I call 'willful ignorance' and so many people with wrong views about the disabled of this country are willfully ignorant, they choose to have an incorrect view even if they are proven wrong time and time and time again, even if their opinions are proven invalid.
Thank you for making me cry, it was cathartic to realise I can't do anything to change my brother. Maybe some day he will change his mind and we can but try to make other people see the truth but they will see it when they are ready to see it.
Oh my dear, I'm so sorry.
ReplyDeleteOur lives are just beyond most people's comprehension.
I've found being ill like a very, very long journey. Things that used to make me cry don't now. I understand more of why people behave the way they do and I know that my illness has taught me the most incredible things and given me strength people like your brother could never, ever imagine.
People have let me down, I'm poor and I lost my home. All the same, I have a wonderful husband, gorgeous children and a handful of friends who would pick up a sword and fight with me just because I asked.
We're happy really. Despite all the pain and the worry and the poverty, we're happy and blessed.
People filled with bitterness and envy will never be happy, and however they judge me, I just see lonely, sad, empty lives. I don't even hate them - just pity them.
I hope it made you feel a bit better just writing it all down :)
I just wanted to say how much your story touched me; it truly saddens me that anyone should be treated so badly by their family when life's already dealt them a bad pack of cards.
ReplyDeleteI wish you all the best hope that things will improve for you, I hope that your husband is providing you at least with love and support. If I could make it so that those closest to you could be understanding and supportive as they most obviously should, I would, but I hope that it is at least some consolation that there are people out there who genuinely wish for your happiness and health, and know that your problems are genuine.
I can empathise with you completely. My younger brother sounds just like yours. He used to complain how he'd paid "hundreds a week" in taxes and never believed that I was (am) as sick I as I told him, and took the view that there couldn't possibly be "that many people that sick" and claiming benefits genuinely. Even when I was in hospital, he was looking for evidence that it wasn't as bad as the tubes, machines, stitches, pain meds and charts told him, and would make comments about younger patients on the ward, finding it hard to believe that they had anything wrong with them. It was like he had a brick wall in front of him. He would constantly complain about shirkers and scroungers, annoyed at how he had to pay to support them, and while he would say, "Of course I don't mean you" it was obvious that he did because he would question every single spending decision I made, no matter how tiny, no matter how absolutely necessary, and would continually push to know when I was going to get better from an incurable disease. I'm in the 10% with no family history, so he found it hard to believe it existed, despite all the evidence. He thought that once I'd had a transplant I'd be cured (he's not alone in thinking that either) but I'm not, and I have other conditions to deal with. We no longer talk and as a result, I have lost touch with him and two of his three children. I know, it's hard to lose family, and friends, but the stress of having to deal with such negativity and pain from someone who should be supportive and showing unconditional love is, in my humble opinion, not worth it. Use that energy on yourself and, here's hoping, one day he'll come around and realise what a [insert your preferred term here] he's been to you.
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