Severe ME: Why is improvement subject to such harsh judgement and not celebrated?

Judging signs of improvement by Jo-anne Knight.

Jo-anne Knight.

I’ve been a member of the ME Association since its early days and have written several articles for ME Essential – the members magazine – over the years.

I’ve also campaigned and fundraised, taken part in research and served for a long time on the committee of an ME charity, but for those who are new to my scintillating company I thought I’d start by outlining my story.

The horrors of severe ME

Looking back, I genuinely have no clue how I survived…”

I developed M.E. in 1994, after contracting a tummy bug and having an anaphylactic reaction to an anti-nausea drug. I mostly shook the initial symptoms off, but two years later following several viral infections I succumbed to M.E. in earnest and became too ill to work. I then developed meningitis while on holiday abroad and was very severely affected for the next decade.  

I could write a book on the horrors of severe M.E.

  • I lost my speech,
  • I lost the ability to open my eyes or lift my head up,
  • I had seizures,
  • I was partly paralysed,
  • I had severe light, sound and touch sensitivity,
  • I was unable to eat solid food,
  • I weighed under six stones,
  • My hands and feet contracted inwards,
  • I crawled on my hands and knees to the toilet, and,
  • I was told on two occasions I was so critically ill I might not make it through the night.

I lived alone, received almost zero medical care, was constantly referred to psychiatrists (the treatment of people with M.E. in the 1990s was diabolical) and was denied both home care and welfare benefits. I took in lodgers so I didn’t lose my home, despite being desperately ill.

Looking back, I genuinely have no clue how I survived.

Signs of improvement

Miraculously in 2006, I started to see tentative signs of improvement, although it took another four years to make it out of bed.

I wish I could tell you it was down to some novel cure, but I’m fairly clueless as to why it happened.

Fourteen years on I still have M.E. and class myself as largely housebound, spending a minimum of 17 hours each day in bed, but I’m no longer bedbound.

It seems to be quite rare for a severely affected adult, particularly one who’s had very severe disease for over ten years, to see any kind of improvement so you’d think I would shout about it from the rooftops, but it’s actually something I rarely talk about.

The reason for that being the judgement many people with M.E. receive when they improve or recover, or even when they simply share their story. 

“I totally understand the jealousy because I’d felt it myself. When I was bedridden, well-meaning friends and family would send me articles of sufferers who had recovered, and it used to make me rage…”

Jealousy

As my improvement very slowly continued, my pain levels inexplicably increased and I eventually discovered I’d been born with Hypermobile Ehlers-Danlos Syndrome, which seems to be more common in the M.E. population than can be explained by chance.

This caused speculation in the community that I hadn’t had M.E. at all – it was hEDS that had caused my symptoms and that’s why I’d managed to improve.

This, of course, is nonsense but I think stemmed from an underlying jealousy that I was experiencing some level of recovery while other severely affected people who had been ill equally as long as me sadly were not.

I totally understand the jealousy because I’d felt it myself. When I was bedridden, well-meaning friends and family would send me articles of sufferers who had recovered, and it used to make me rage.

“These people obviously didn’t have M.E. to start with!” I used to shout. And, actually, some of them didn’t – until we have a diagnostic test for M.E. people will be diagnosed who don’t have it. 

But the truth is some people who have M.E. thankfully do improve or recover and I was simply jealous that they were getting better while I wasn’t.

Relative stability

By 2010 my M.E. finally stabilised into a new normal.

I could drive short distances a couple of times a week in an automatic car. I could shower once or twice a week (for some reason bathing still wipes me out). I could cook a meal using pre-prepared ingredients from Tesco on a ‘good’ day, but not on a bad. I could spend more time on my laptop, but only if I were in bed – I still get terrible brain drain when sitting or standing.

“I shouldn’t have to justify or explain, especially with my M.E. history. However, the reality is I am judged…”

Unfair judgement

I adopted a little rescue dog and although I paid someone to walk him for me each morning I took him out myself every afternoon, either on my mobility scooter or sometimes actually walking.

I hesitate to write that because of the judgement which will come my way. How can someone who has M.E. be able to walk a dog?! Well for a start I’m not going 10 miles up a mountain, it’s a gentle stroll for about 15 minutes on the flat and only if I’m having a good enough day, plus I have to go straight to bed afterwards.

But I shouldn’t have to say that. I shouldn’t have to justify or explain, especially with my M.E. history. However, the reality is I am judged. Some old-timers resent my improvement, while the more newly diagnosed, still in the acute phase of the illness, question my diagnosis or say I can’t possibly have the M.E. that they have.

I eventually ended up on a drip in hospital and that was the end of my working life. I was 26 years old.

Prognosis and permanency

The reality, of course, is that M.E. has distinct phases and for many people (though sadly not all) the disease changes over time.

For the first couple of years I was still working, though I used to have my head down the loo at 10am due to severe nausea, fell asleep in my car each lunch-time, and had to pull over on my journey home to throw up in a bucket I kept in the boot. I eventually ended up on a drip in hospital and that was the end of my working life. I was 26 years old.  

For the next two years I was largely housebound and had to go to bed for a nap each afternoon. I felt poisoned, fluey, and achy, and my brain was full of treacle. I was exhausted yet had horrendous insomnia. But I still cooked for myself (if you can call frozen pizza cooking) and drove the car and tried to keep in touch with my friends and keep my relationship going. The payback from the effort of trying to still be ‘normal’, however, was huge.

Then I became severely affected and my whole world disintegrated. Every second of every day felt like a tortured lifetime and, if I’m honest, there were times I prayed to die because I didn’t think I could endure the suffering for another second. I have no clue how I kept my sanity.

“I no longer feel fluey, achy, or poisoned unless I way over-do it, although I still get frequent sore throats. I simply have little stamina or energy…”

Reaching the plateau

After 14 years I started to get my life back again and have now plateaued. But it isn’t like my experience of the early, pre-severe phase of the disease. I no longer feel fluey, achy, or poisoned unless I way over-do it, although I still get frequent sore throats. I simply have little stamina or energy.

I’m in pain every second of the day. My brain fog is scarily bad. I still can’t read books and have acquired dyslexia. I have quite substantial brain symptoms, including worrying issues with my memory. I get easily confused and muddled. I still can’t stand still or sit upright for long periods, though I can last longer if I move around.

I’ve been diagnosed with peripheral neuropathy and migraine disorder; severe endometriosis; adenomyosis and polycystic ovaries; a heart murmur; tinnitus and auditory hallucinations; treatment-resistant GERD; visual snow and severe floaters which affect my sight.  

I’m now in my fifties and worry about heart disease and osteoporosis after decades of inactivity. I’m still poleaxed for weeks or months if I catch a cold or a virus. I wear a wig because my hair has fallen out to such an extent I look like I’m having chemotherapy.

In 2013 I started passing out every time I ate and discovered I also have a rare Mast Cell Disease and now have anaphylaxis to just about every drug known to man. There is anecdotal evidence that Ehlers-Danlos Syndrome, Mast Cell Disease and M.E. may in some way be linked.

“To be judged by other M.E. sufferers simply because I’m in a different phase of the illness to them is deeply upsetting, not to mention disrespectful considering the years I’ve given to campaigning for, and helping, our community…”

The perils of being more active

Despite all that, however, most days I have some hours when I can be active. My brain is best in the early morning – I have a popular blog and write my posts around 7am. I’m at my best physically between 9am-2pm, which is when I’m out of bed.

I then conk again around 3pm each day which is when I need to go back to bed and I have to stay there until the next morning, though for parts of that time I’m able to be mentally active on my laptop.

It’s still a very fine balancing act between rest and differing types of activity and, importantly, avoiding stress.

To be judged by other M.E. sufferers simply because I’m in a different phase of the illness to them is deeply upsetting, not to mention disrespectful considering the years I’ve given to campaigning for, and helping, our community.  

It’s not just the judgement of other sick people I have to deal with either, it’s also the judgement of healthy people, who:

  • see me not working, yet looking to all intents and purposes fine, and assume I’m lazy and choosing to live on benefits.
  • see me walking round Boots in town, then taking the dog out on my mobility scooter.
  • see me using my mobility scooter one day then walking the dog the next!

I’d need a whole other article to talk about the judgement I’ve received from medical staff over the years. I constantly find myself justifying my situation which then makes me feel hurt, misunderstood, and angry.

“Suddenly, cyberspace was more hostile, critical, judgemental, and argumentative. I began to withdraw because, like most people with M.E., stress and upset make me feel dreadful. I was, once again, isolated.”

The internet – a double-edged sword

I was chuffed to bits when the internet became widely available back in the late 1990s and for my 30th birthday I treated myself to a home computer. It was a great big clunky thing which sat like a boulder on my little over-the-bed table and contained email, a crude browser and nothing else!

I was finally able to mix with society again, albeit in cyberspace and from my bed.  

The first few years of the world wide web were lovely. I joined some really fun and supportive groups of other M.E. sufferers, many of whom I’m still in touch with 20 years later. Then social media arrived, and everything changed. 

Suddenly, cyberspace was more hostile, critical, judgemental, and argumentative. I began to withdraw because, like most people with M.E., stress and upset make me feel dreadful. I was, once again, isolated.

I rarely see any of my long-standing M.E. friends commenting publicly on social media either, which is such a shame.

We old-timers could share so much knowledge and wisdom of living with the disease and have great compassion for whatever phase of the illness people find themselves in because we’ve experienced most of them. But the often combative and somehow competitive nature of the internet (“my illness is worse than your illness”) isn’t kind or supportive. 

“What is the intention of the criticism?  What is the person judging hoping to gain?”

Respect the individual

We all have individual illness experiences, even with the same disease, and are at different stages in the ‘journey’.

Some of us have additional diseases to cope with which impact on our M.E., while others have social responsibilities such as caring for children or elderly parents which impacts on our health in a different way.

“Recovery is the Holy Grail, yet we are completely ignoring anyone who has seen a substantial degree of improvement…”

Children and young adults will have a totally different experience of M.E. to someone in their 60s or 70s. Those beginning to recover may be struggling with trying to get back to work part-time.

I totally get the anger and frustration felt by many people living with chronic illness, I’ve felt it myself, but I’ve never really understood the judgement.

What is the intention of the criticism?  What is the person judging hoping to gain?

There are two groups of M.E. sufferers we hear very little from. The severely affected, because they are too unwell to write articles like this or speak to the media, and the recovering or recovered.

While researchers are now studying the severely affected, and about time, no-one is looking at patients who have improved. 

Recovery is the Holy Grail, yet we are completely ignoring anyone who has seen a substantial degree of improvement. Even if a person with M.E. hasn’t recovered but is managing to live successfully within the confines of the disease, their methods for doing so aren’t being studied.

It’s bonkers to me!

Not only that but despite patients all saying they want to get better, when one of their own does just that they often face disbelief, criticism, or resentment.

“Having M.E. robs us of just about everything, but not the ability to be supportive or kind. We are a community, albeit one we wouldn’t have chosen to be a part of, and it should be us against the world not us against each other.”

Jo-anne Knight

The ME Association

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