A Reluctant Confession for ME Awareness Week

Some years ago, around the time I was diagnosed with ME, I reconnected with an old school friend. She took to phoning once or twice a year to update me on her news, and when she asked what I was up to I would explain (yet again) that I was chronically ill.

Her responses progressed from sympathy, ‘Get well soon!’, through incomprehension, ‘What, ill again?’, to incredulity, ‘You can’t still be ill?’.

The last time we spoke I’d been housebound for almost five years. She described her new job, her new husband, her new home, her new nephew, before finally asking what was new with me. When I replied that I was still sick and still housebound there was an awkward pause.

      ‘So…it IS cancer then?’ she finally blurted.
      ‘Not cancer,’ I told her ‘I have severe ME’.
      ‘Oh, so you’re not reeeeally ill then!’ she pronounced with palpable relief.

I tried to explain the extent of my illness but she cut me off. Apparently she knew all about ME because her next door neighbour had had it the previous year.
      ‘She’s a single mum,’ she told me pointedly, ‘but SHE worked full-time and she was better in a few weeks.’ 
I tried explaining that her description didn’t meet the neurological criteria for ME but it was clear that nothing I could say would change her opinion.

      ‘Of course, I really should have known that it wasn’t anything serious,’ she told me at the end of the phone call, ‘if it had been cancer you’d have been dead or better by now.’

And there’s the rub: ME is an illness that rarely kills but cannot be cured. Which leads to my reluctant confession, because you see, when I was at my very sickest (bedridden and in pain; paralysed for hours at a time in a darkened room) with the thought of a lifetime of illness stretching before me I sometimes secretly wished that it had been cancer. At least then the doctors might have done something to help me. At least I might have had a fighting chance of recovery.

It’s the sort of thing you can never actually say aloud. The sort of thing that would cause untold offense to anyone without first-hand experience of ME because, lets face it, we’ve all been touched by cancer at some point in our lives, even if we’ve never had it ourselves. But let me explain:

No one ever doubts the seriousness of cancer or tells the cancer patient that it is all in their mind and the sure-fire cure is just exercise and positive thinking.

Every doctor will have heard of cancer. No medical or nursing student will graduate without a basic understanding of cancer’s causes, effects and treatments.

No one blames the cancer patient if they aren’t getting better or tells them that they simply aren’t trying hard enough.

While cancer always carries a risk of death it is rare that doctors cannot attempt at least something to treat it. Most patients have a chance of recovery, however small.

Billions of pounds are spent globally every year on biomedical research for cancer. New drugs are being developed all the time and recovery rates for many cancers continue to improve.

While the mortality rate for cancer is much higher than for ME, the idea that people can’t die from ME is entirely mythical. Deaths from ME are typically prolonged and agonising, following years or decades spent isolated and bedridden without adequate medical care. While an estimated mortality rate of 3% may not sound significant, if that was your child, your sibling, your partner or parent, even one death from ME would be one death too many.

Doctors liken the effects of ME to harsh chemotherapy; its severe form is more debilitating than both AIDS and terminal cancer right up to their very final stages. Dr Mark Loveless, Head of the AIDS/CFS Clinic at Oregon University, described patients with severe ME as feeling “effectively the same every day as an AIDS patient feels two months before death”. Another specialist in both conditions, Dr. Nancy Klimas, controversially stated that she would choose to have HIV over ME because of the treatments and better quality of life that would be afforded her.

Friends that have survived cancer have told me they were lucky not to have what I’ve got. A terminally ill friend told me that while she didn’t want to die, she would take her own life if our roles were reversed rather than face the prospect of lifelong illness.

Healthy people tell me to ‘look on the bright side, at least it’s not cancer’ as though this will somehow make it all OK. I don’t know any other illness for which this would be acceptable. No one comforts patients with MS by comparing it to Alzheimer’s, or tells someone with cancer that at least it’s not Motor Neurones Disease.

Please don’t think for one moment that I am trying to belittle cancer or underestimate the ordeals that cancer patients go through. I myself have lost friends and family to cancer so I know its devastation, but because of ME I missed out on seeing them in the last months of their lives; I couldn’t visit them in the hospital and didn’t make it to their funerals to say goodbye.

Following the blog of a woman with terminal cancer, I was horrified to realise I envied the amount of life and friendship she managed to cram into her final two years while I wondered from afar if I would ever get the chance to experience those things again. She is now dead, I am still housebound and I live with the knowledge that I would happily have traded some of my years for a fraction of her experiences. I cannot tell you how shitty that makes me feel or how terrible a person I fear that it makes me.

I have lost loved-ones to cancer, but also watched others recover and return to full healthy lives in the years of my illness while my life stays on hold. Weddings and christenings, parties and holidays all go on without me. I have no doubt there are some (but not all) with a terminal diagnosis that would happily trade death for severe lifelong illness, but at my worst times of illness I couldn’t help but wonder if ‘dead or better’ might not be preferable. I know many people far worse affected than me who wouldn’t hesitate to take that gamble. On my better days I wonder how I could possibly think these things, on my worst days I simply cannot help it. I can’t tell you how shitty that makes me feel either.

Of course many ME patients get cancer as well and endure years of gruelling treatment only to still be ill at the end of it. Of course I am immensely grateful that I don’t have cancer but please don’t mistake ME for being the easier option. There are many terrible illnesses that I will hopefully never experience, but telling me to be thankful for conditions I haven’t got won’t make what I have got any more bearable.

So this ME awareness week, if you know someone who has ME (or any other chronic condition) whatever its severity, please be aware that the prospect of lifelong illness is a difficult and frightening one. Even if these words enrage you to the point that you never speak to me again, please speak to them, let them know that you care and do them the courtesy of taking their illness seriously. And please don’t forget that their family and friends will be suffering too.