The Guardian ‘People’s Panel’, 26 August 2011 – two people with ME join a discussion on distress and chronic illness

August 26, 2011

From The Guardian Online, ‘Comment is Free, The people's panel' section, 26 August 2011.

Four readers with chronic illness tell us how they handle the distress their condition can cause and the support available

According to a report published by the thinktank Demos, at least 10% of suicides in Britain are linked to terminal or chronic illness, accounting for more than 400 deaths a year. These findings draw attention to the unacknowledged level of distress caused by some chronic conditions.

Joseph Wilsdon aka JoeW: ‘Hirschprung's has given me a goal'

My condition, Hirschprung's disease, is not a dignified illness. The effects centre on the misbehaviour of one's stomach and rectum. Anyone who has lost control of either within living memory does not forget the experience. The many surgeries I have had have left me with daily digestive discomfort, which varies in severity from mild to extreme.

James Joyce wrote: “To bear even the sting of an insect for all eternity would be a dreadful torment.” To bear it for 65(ish) years will be quite enough for me. That would be plenty more years than I was initially predicted to have, and I have no desire to revisit the bad old days of colostomy bags and nasal gastric tubes in old age.

As a sufferer, to admit mental frailty, especially in terms of depression, is to risk sounding ungrateful for the considerable time and money spent on rescuing me. But I don't consider myself depressed, never mind suicidal. I love my work as a teacher, I have wonderful parents, I've lived and worked on four continents and have made great friends of every colour and creed. Nearing 30, I have had a youth well spent.

I am glad I survived and I am glad I have Hirschprung's. Overcoming it has provided my life with a goal, a drive and focus that I may otherwise have lacked. I simply don't buy into the underlying assumption that it is necessarily preferable to live for as long as you possibly can. Life will feel too fast and too short whether you have 60 years behind you, or 110. It is what you do with your time that counts.

Joss Morton aka Swimmy: ‘The social attitude to illness is taking its toll on me'

Living with chronic illness and pain everyday makes me, I admit, feel as if I am at the end of my rope on a fairly regular basis. People, even those who are close, easily forget what the ill person cannot: that suffering is ongoing even when there is no outward sign. But it is not so much the illness itself (in my case, ME and spinal arthritis) but instead the social attitude to illness that is taking its toll on me – the fear caused by the relentless haranguing for being unable to work. That, and the loneliness of it all.

The government constantly reminds me, through its willing mouthpiece the media, that I am worthless. I can't work, claim benefits, and am therefore to be mistrusted to the point where I am told that my very perceptions of my own body are not reliable and that I will, at some point, have to again prove my inner physical truth to a privately employed bureaucrat working for a flawed system in order to be allowed to continue to live.

Last week I called the Samaritans – the man was nice but he can't change the fact that society as a whole has decided that chronic illness doesn't really exist and that all those suffering it must be lying, workshy scum. We are all young and fit until we die now – didn't you hear? I live in a Kafka novel and my self-esteem is being eroded just a little more every day – soon there will be none left.

Nasim Marie Jafry aka NasimMarieJafry: ‘It's hard to convey how hellish ME makes you feel'

I have ME, diagnosed in 1984 by a consultant neurologist when I was an undergraduate. Almost 27 years later, I remain ill. It's hard to convey how hellish this illness makes you feel – especially in the severe, bedridden episodes – you experience pain and neuro symptoms you didn't think possible. You feel as if you are dying. You feel despair. You wonder how much more you can cope with.

If you are lucky, you begin to show infinitesimal improvements over time – but without strong family support this illness could undo you. It takes about a decade to adjust. Undoubtedly, the stress of this condition is made worse by the way the illness is perceived by the media. In the 80s, it was known as the “yuppie flu”; now we are “mad, bad and dangerous to know”. We have for the past 20 years been erroneously labelled as mentally ill by a clique of UK psychiatrists, who have their views recycled endlessly by health editors who do not dig deeper. I cannot emphasise how much more difficult this makes ME to cope with. It makes you want to weep.

I was a happy, straight-A student enjoying a typical middle-class family life; I became catastrophically ill because I had an abnormal immune response to the Coxsackie B4 virus. One influential researcher states that CFS – he refutes the original name ME – is a “cultural phenomenon, a metaphor for our times”. With all this flak, I understand why someone with severe, unrelenting ME, could be driven to suicide.

Andrew Kliman aka Stones2005: ‘Give me access to my data and I will use it better than the NHS'

I was diagnosed with type 2 diabetes on 14 May 2009, my dad's birthday. I didn't mention it when I called him to wish him all the best. Type 2 makes you feel so alone because your first thought is, “I have done this to myself”. It's embarrassing. Subsequently the information you are given about genetics and evolutionary biology give you an argument about why it isn't all your own fault. You get angry at the supermarkets and restaurants that have thrived on your illiteracy about food, but you can never shake the knowledge that if you watched what you ate and did more exercise, you wouldn't have it.

Doctors tell you to self-manage diabetes, but the tools to make it easier aren't available. I want a single secure place, online, to store all my information about my condition. I want to know what my previous HBa1c (long-term blood sugar tests) and cholesterol levels are. I want to know when my last eye appointment was and reminders for the next one, and I want the GPs to be able to see this too so I don't have to keep pissing around with new prescriptions for the same drugs that they keep getting wrong.

The lack of co-ordination is staggering. I want to control my information and I can't. The current system makes my life harder, not easier. I can understand the frustration that drives people who are already depressed and alone to take drastic measures. Give me access to my data in usable electronic form and I will use it better than the NHS.

1 thought on “The Guardian ‘People’s Panel’, 26 August 2011 – two people with ME join a discussion on distress and chronic illness”

  1. Joss Morton and Nasim Marie Jafry have expressed so well the distress and despair involved in struggling with this illness. Having been ill for many years with ME and severely affected, I feel my burden has just got even heavier over the past year. It is bad enough suffering the extreme debility and pain but to have to fight against the accusations that you are a burden to society; constantly having to justify yourself, and also to see the credibility of the illness you suffer from being eroded on a weekly basis is a burden too heavy. It is a small crumb of comfort that I’m not alone in feeling this way. Thank you.

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