Friday, February 18, 2011

Death Threats - By Sue Marsh

 Originally posted here

Laura is 29 years old. Until a few years ago, she was a vet, just qualified and looking forward to her future. She was engaged to Paul and they were planning their wedding. She lived a pretty "normal" life, in a "normal" home and enjoyed walking holidays and playing "cool auntie" with her young nieces and nephews.

Her wages had improved! Finally, after all those years of studying, she could afford the odd luxury. She and Paul treated themselves to a weekend away to Barcelona when she got her first "proper job" and soon after, she'd bought a lovely new car. 


For a while though, she'd been getting shooting pains in her hips and knees. crouching on concrete floors, treating sick animals, or hours in the cold and damp waiting for a new foal had become very uncomfortable. One day, she found she physically couldn't get up from the floor and had to wait for someone to come and help. 

She went to her GP a few times, but he didn't seem to think much was wrong. He suggested she take paracetamol for the pain and take it easy in the cold. 

She carried on doing her job, but it became harder and harder. Soon, getting out of bed took 5 or 10 minutes - her joints felt stiff and painful and she seemed constantly exhausted. She started to hobble a bit, embarrassed, but unable to help it. 

When she got in from work all she wanted to do was fall into bed. She took all the paracetamol she could and  even added in some ibruprofen, but things just got worse and worse. She never wanted to go out to dinner or have sex, walking holidays seemed unimaginable and she was always irritable with pain or exhaustion. Despite feeling exhausted all the time, she got less and less sleep. As the pain increased, she could no longer find any way of getting comfortable or relaxing. 

It took a year or so before her doctor referred her to a specialist. By then, she could barely walk, shuffling like an old lady. Her skin was pale with exhaustion, her hair was dull and the dark circles under her eyes made her look haunted. The consultant ran a few tests and then gave her the news that she had arthritis. What's more, it was a particularly virulent case of early onset disease. It was degenerative and her symptoms would only get worse. He told her there was no cure and the words rang in her ears. There were however treatments they could use that might slow the progress of the disease or even bring about remission. 

The first treatment made no difference at all. The second gave her debilitating, splitting headaches and the third (which she was warned carried a risk of brain tumours) made her vomit almost constantly. The consultant finally prescribed the strongest drug available to him and Laura had to learn to give herself injections in her tummy every two weeks to take the medication. For a while, the injections seemed to work, but then they just stopped. There was nothing else to try and she simply fought on through the pain, taking strong opiate painkillers when she couldn't bear it any more. 

She had to stop working. Her precious job, her animals, her ambitions and dreams all seemed to be slipping away. She applied for Employment Support Allowance ( ESA. Previously Incapacity Benefit) but was found  fit for work after a humiliating "assessment" where she was asked to touch her toes and climb some little wooden steps. 

Sadly, Paul couldn't cope. Life had changed so completely, he no longer recognised the woman he lived with. She wasn't happy-go-lucky or carefree any more and their romance slowly fell apart. In the end, he left her. Their home had to be sold and Laura found herself applying for housing benefit and renting a tiny one bed flat above a shop. The stairs were like a mountain now, so she rarely went anywhere at all any more. She found it increasingly hard to have a shower or cook a meal - her fingers were stiff and swollen with arthritis too by now and the local council were only able to provide care for a few hours twice a week. 

Her sisters couldn't care for her very much - they had busy lives of their own and she missed the kid's laughter and rolling around on the floor with them or playing tickles or chase. Suddenly she had so much time but nothing to fill it with. 

It seemed like every day she had to fill in another form or attend anther work programme, but at the same time, all she heard on the news was that most sick or disabled people were scroungers or skivers. She started to weep too often for her old life and had lost so much so quickly, that she struggled to deal with the barrage of emotions she felt. 

Where she used to be self-sufficient, now she was reliant, where she used to be energetic, now she was exhausted. Luxuries were forgotten and she worried about putting the heating on or buying food - after her rent had been paid, she only had just under £400 to pay for everything else.  

Sometimes she wondered what on earth had gone wrong? How had she gone from a vibrant, happy young woman with a whole life of plans ahead of her into this? 


For a few days there has been a debate over whether it is counter-productive to discuss the risk of rising suicide rates in the broader debate over cuts to sickness and disability benefits. Today, a passionate campaigner for disabled rights wrote this article for the Guardian. I agree with very much of what she says, but I don't agree that talk of suicide is being used in this debate as a tool or a threat. I think that given stories like Laura's it is a worrying possibility. This is a group of people just like Laura, who already face terrible challenges and I do believe some are unable to cope with the extra guilt and fear they also now face. 

I found the comments that followed the article depressing. So many seemed to think that stories of despair and hopelessness were exaggerated or that talk of ending one's life was some form of militancy used to blackmail the government with. 

Since I've started writing this blog, I've been shocked by how many sick or disabled people say they can't go on. Not dramatically, but matter-of-factly. Time and time again. At least weekly, I've heard from people in despair, unable to go through another assessment or take yet another cut in their already meagre lifestyles.

If people are wanting to debate with this shocking degree of candour, then I think we should all be listening. Few people wish to discuss suicide on a public forum and if they start to do so in significant numbers, I can only believe that alarm bells should be ringing. 

I discovered this week that no-one actually keeps statistics into how much more likely sick or disabled people are to end their own lives. One NHS document reports that it is a "significant risk factor" but the ONS confirmed to me that they had no studies at all on record. With this in mind, if suicide does increase amongst this vulnerable group, no-one will know. 

A full and frank debate needs to base itself on facts. Not hysteria or threats, but information. In searching for that information, some unpalatable subjects might turn up. But dismissing a debate about them is surely not a solution?

TODAY'S SIMPLE ACTION : This is a sensitive issue. Nonetheless I think it important to try to explain why people might feel so desperate. To understand the support we need, people must understand our lives. 
WILL YOU SEND THIS TO JUST ONE PERSON WHO ISN'T SICK OR DISABLED? Someone you trust to read it and try to understand? Either by email or twitter or facebook or by writing to you MP or local paper? We need to expand the debate and reach those who don't know much about these issues. As ever THANK YOU


Emma said...

I honestly suspect the issue isnt discussed becuase they secretly WANT that, for us to just give up and bail out peacefully, that's way better for them. I recently had to fill out one of those mental health assesment form, and was annoyed by how it seemed to only apply to depression with no cause! I think depression with a cause is WAY more common, and I'm bemused by the fact that having totally logical situational depression means that I have to wait forever (a year and a half at this point from a 'high suicide risk' referal... frankly it seems they couldnt give a stuff.

Anonymous said...

I have come pretty close to suicide a couple of times. I would have taken my disabled son with me. I could not have left him behind. It was the fact that I also have another child which held me back. I know he would have been taken care of by family but I couldnt do that to him.

Many people do feel total despair frequently. There seems to be no light at the end of a long dark tunnel. For me suicide would not have been a cry for help. I would have tried to make absolutely certain that I would suceed and during the periods of time I am speaking about I never mentioned my thoughts to anyone.

It is a big issue. People considering it, or doing it, deserve the respect they have rarely received during their various struggles with life.


Anonymous said...
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Anonymous said...

I have, amongst other problems, ME/CFS, and we have as much to go through as most. Each assessment stands a good chance of you being assessed as having nothing wrong with you except a bad case of "hypochondria and learned helplessness". I've never actually had a doctor tell me to "F off and die," but sometimes it's seemed quite close.

Your article says, "I've heard from people in despair, unable to go through another assessment." I think there is one word missing from that phrase. "One more HOSTILE assessment."

Someone trying to work out what you might be entitled to is one thing - tiring, depressing and undignified. Assessment where someone is trying to trap you into doing something which can be misinterpreted, to tell you that there's nothing wrong you, which requires you to be ultra careful about every word and gesture from the minute you make the arrangements to the point where you leave the area - that is different.

Add in the need to make sure that you never ever do anything which might indicate that you might not need something you genuinely qualify for - just in case a neighbour with a grudge is watching you and will ring the shop-a-scrounger hotline.

Now I'm beginning to see retirement age on the horizon. And seeing more and articles and online comments on how my age group has stolen the future from the young ones. How living in house which has more than 2 bedrooms is a sin when there are families out there who need what I've got.

I am in no doubt that I am a burden on society, who has virtually nothing to offer to anyone - and never will have. There are still a few people (4, at last count) who would be deeply upset if I died, but I am trying to make sure that I have a suicide kit together. One more serious restriction and I will need to use it while I still can.

Anonymous said...

Oh yes, just to add to what I wrote a couple of minutes ago - and this will probably be unwelcome to many of the Broken of Britain - it's not a matter of money (yet).

I wouldn't fear a genuine assessment either, but I'm not going to get one. This assessment is about finding as many people as possible fit to work, and then hanging them out to dry where the rest of the population can through rotten vegetables at them.

What is finally getting to me is the hostility, "Either you are genuinely disabled in which case you're a useless f***ing sicko (to quote) or you're a benefit fraud living a life of luxury by stealing from honest folk who have to work hard just to make ends meet."

Ms Glastonbury said...

I would have ended it had my partner not stuck around. (Though I wouldn't tell him just in case he did want to leave. I wouldn't keep him trapped in a relationship where he doesn't get much out of it.)
I was 21 years old. Working in the best paid job that I'd ever had (£40K!!) and then I got sick. I lost my job because I couldn't do it anymore and have got progressively and progressively worse. I applied for ESA and thankfully didn't have too many problems apart from the humiliation but if things keep getting worse and worse financially then I don't see any way out except to break the law.
Imagine this - young disabled mother stealing nappies and food from Tesco because I can't afford much. At least if I got put in prison I'd get a roof over my head, three meals a day and all the medication I'd need! Got to be better than the alternative of living with no money and debating over heat or food.

Ms Glastonbury said...

(Oh, I have autoimmune diseases that I didn't know that I had until I nearly died and a form of arthritis. My partner had to leave his job to look after me.)