Category: Energy Limiting Chronic Illness

Breaking away from a medical model of chronic illness

Chronic Illness, ELCI, Energy Limiting Chronic Illness

Catherine Hale advocates breaking away from a medical model of chronic illness.

A response to Mo Stewart – Part One Thank you, Mo, for this very thoughtful and stimulating critique of Reclaiming Chronic Illness: an introduction to the Chronic Illness Inclusion Project. Two really important questions you raise stand out to me:

1. As you say, the meaning we attach to the term “chronic illness” in this project does not reference medical definitions but considers chronic illness as a social identity. Does that make it invalid?

2. And in my struggle to develop a more precise language, such as “energy-limiting chronic illness” or “stamina impairment”, am I creating unnecessary divisions and excluding people who share a common cause, especially people with chronic pain conditions?  Why can’t we simply unite under the umbrella of disabled people and fight our common oppression, you might ask?

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Changing the system so that more chronically ill people can work

Chronic Illness, DWP, DWP Benefits, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness

Victoria Clutton highlights the barriers to work faced by the chronically ill.

In May, I started my first ever job which I found through a wonderful charity called Astriid. My job is five hours a week, working from home, with no set hours and amazingly supportive co-workers – the holy grail of employment opportunities for the chronically ill. Even so, it’s been a huge adjustment and ongoing struggle. A few years ago I was declared fit for work despite protestations by my doctor and two other medical specialists. The experience was a year of ludicrous horror before I eventually relapsed badly enough for it to be worth re-applying for benefits. These contrasting experiences have caused me to reflect on the changes that are necessary to allow more chronically ill people to work.

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It’s not ME, it’s you – can the chronically ill embrace the social model?

CFS, Chronic Illness, ELCI, Energy Impairment, Energy Limiting Chronic Illness, ME, Social Exclusion

Leonora Gunn discusses society’s role in improving the lives of the chronically ill.

The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need to be ‘fixed’ or changed to fit in to society, and suggests that society needs to be changed to include everyone.

This might seem like a funny thing for someone like me, with a chronic illness, to believe. Surely illnesses, like ME, need ‘fixing’? And how can it be society’s fault that I am ill?

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Ill versus disabled – is there a distinction between the two?

Chronic Illness, Disability, Energy Limiting Chronic Illness, ME

Joyce Fox examines society’s differing reactions to disability and chronic illness.

Disabled activist, Stella Young recently wrote: ‘The social model tells us that we are far more disabled by inaccessible environments and hostile attitudes than we are by our physicality. My disability comes not from the fact that I’m unable to walk but from the presence of stairs.’

How true is this of people who are chronically ill? Accessibility is rarely the issue – we often have little energy to go out at all.

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Sorry

CFS, Chronic Illness, ELCI, Energy Limiting Chronic Illness, ME, Social Exclusion

Patricia de Wolfe is tired of saying ‘sorry’ on account of her energy-limiting illness.

I’m sorry. I’m really sorry.

Sorry I can’t make it to your birthday party, your family gathering, your funeral. Sorry, no, I can’t come over for tea on Friday. Why? No, I’m not doing anything else. But I’m going out for lunch the Tuesday before. Yes, I know that gives me Wednesday and Thursday to recover but Friday would still be pushing it. And tea is a bit late in the day for me. Yes, I am sure. Perhaps we could meet next week? Yes, I know I cancelled last time. Yes, of course I understand you’re very busy… Sorry.

I want to stop apologising. I want to stop explaining. For me, inclusion would mean, at the very least, living in a society in which it is generally accepted that some people are ill. Chronically. Perhaps permanently. And in which we are not regarded as freaks, or hypochondriacs, or scroungers, or, for that matter, just “poor things”, but as people valiantly trying to cobble together something that feels like a life in the teeth of gargantuan obstacles.

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On not being believed

Chronic Illness, Chronic Pain, Disability, DWP, Energy Impairment, Energy Limiting Chronic Illness, Mental Health, Systemic Disbelief, Wheelchair

Wheelchair Vista on the lasting effects of being doubted.

Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.

I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.

When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.

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Stairs or stares? Obstacles to using a wheelchair with invisible illness

Chronic Illness, Disability, DWP Benefits, ELCI, Energy Limiting Chronic Illness, Systemic Disbelief, Wheelchair

Ella Sumpter talks about fluctuating mobility levels and reactions to her wheelchair use.

I have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I have so far been left out of.

I have a problem though. I have a very large psychological barrier to actually using it.

So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I’ve already blogged about using a walking stick and my fear of abuse as well as fear of people thinking I use a stick to look more ill and claim extra benefits.

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Chronic Illness and graduation

Chronic Illness, Education, Employment, Energy Impairment, Energy Limiting Chronic Illness

Rebecca Boot tackles the painful subject of employment for the chronically ill.

I’m back at university, studying again after my body threw a fantastic tantrum the last time I tried it.

My university has a real focus on employment and one of the highest graduate employment rates in the country. That is great, everyone wants to be able to get a good job when they leave university right? Isn’t that the point of going?

Not really, not for me at least. I applied to Uni because I love learning and my brain likes to be busy.

But here’s the rub – I am not employable, not really, not as I am now. I have plenty of skills, I am smart, I’m a self-starter, I have a whole bunch of somewhat impressive things on my CV, I meet the person specification for a whole lot of jobs already. But I’m not employable.

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Accessing Support: A system geared toward physical impairments

Brain Fog, Chronic Illness, Disability, DWP, DWP Benefits, Education, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness, Social Care, Wheelchair

Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.

I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.

As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.

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From ‘sick’ to ‘disabled’ – my own journey

Brain Fog, CFS, Chronic Illness, Disability, DWP Benefits, ELCI, Energy Impairment, Energy Limiting Chronic Illness, Housebound, ME, Social Model of Disability

Catherine Hale considers how half a lifetime of chronic illness has changed her understanding of the term ‘disabled’.

I’ve been sick for nearly 30 years. That’s the whole of my adult life. I always thought of myself as ‘disabled’ in the sense of being very incapacitated. During my bedbound phase I couldn’t wash, feed myself, go to the toilet or write my own name; nor could I read, watch TV or have a conversation.

But I never thought of myself as ‘disabled’ in the political sense used by the disabled people’s movement. That is, I never thought the disadvantages I suffered in not having a job, a career, or a social life were due to an infringement of my rights. It didn’t make sense to blame my profound isolation on other people or organisations excluding me unnecessarily or treating me unfairly.

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