Making the non-visible more visible

Sonya Chowdhury, Chief Executive at Action For M.E, details the importance of  understanding the complexity of Myalgic Encephalomyelitis (M.E.) and other non- visible disabilities. 

For many of us, getting online is a given. The services we provide, the business we conduct and the connections we make rely, in no small part, on our ability to connect digitally.

At Action for M.E., digital plays an essential role in peer support services for children and adults isolated by the serious neurological condition Myalgic Encephalomyelitis (M.E.). They tell us our online forums and social media support are a lifeline.

Isolation

So, when I read about Labour’s election pledge to extend free, full-fibre broadband to the UK by 2030, I was surprised to find myself thinking: so what? Of course, there’s much to admire about this ambition, especially for those, for example, cut off because of where they live or their financial circumstances, but there is simply not enough being done for people isolated because they live with a chronic, invisible illness like M.E. One in four children and adults with M.E. – which affects more people in the UK than Parkinson’s disease and MS combined – are so severely ill that they aren’t able to sit up in bed, or, worse still, be hugged by a loved one because of hypersensitivity to touch.

Heightened sensitivities mean that use of phone or tablet screens is, for some, minimal or even impossible. It is absolutely right that we use the social model of disability when considering policy and supporting people to be better connected. But for those whose physical functioning is so minimal, who truly are disabled by life-changing symptoms, it feels irrelevant at best.

In our recent Big Survey of more than 4,000 people with the illness, 92% of adults and 97% of children and young people said they felt isolated and left behind by the people in their lives who just don’t “get it”.

Young people with M.E. often tell us that feeling forgotten, and the isolation that comes with M.E., can be worse than the debilitating physical symptoms themselves. People with M.E. need another solution.

Before we can even start to effectively plan that, we have to better understand the complexity of M.E. and other non-visible conditions more effectively.

How can we better see conditions that are often hidden?

Take post-exertional malaise – the increase in debility brought on by any physical or mental activity – a hallmark symptom of M.E. This may be delayed by hours or even days and is likely to fluctuate, too.

What impact might this have on your ability to connect with services you are offered? What about those who are too ill to advocate for themselves?

Getting the basics right

Action for M.E.’s regional advocacy service recently supported an adult who had been discharged from hospital with visits from a paid care service twice during the day to assist with getting to the bathroom, because they were unable to get out of bed without help. However, no one had considered this individual’s needs overnight.

The consequence: they were left, on several occasions, in soiled sheets. Our advocate had to work incredibly hard just to get the basics in place before the complex needs could even start to be considered. This is not because health and social care staff are indifferent – quite the opposite. Despite the considerable strain on the NHS and our fragile social care system, my team receives referrals from committed staff determined to get their patients and clients the best possible care.

Holistic approach

M.E. is a non-visible disability in so many ways. Some can’t see it, because they haven’t had the right training or information. Some won’t see it, because we don’t have the biomedical research to dispel lingering doubt and stigma. Only when we understand the complexity of M.E. and other non-visible conditions and take a holistic approach to those living their lives in the face of these challenges, can we start to adapt services and support to meet their needs.

 

To discuss this article, contact Liz Zacharias : liz.zacharias@campbelltickell.com

This article is also featured in CT Brief, Issue 46 – Health, Care & Support edition

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