I’ve just come out of the most severe relapse of ME I’ve had in several years. Normally I have one every 3-4 months for 3-4 weeks, but this time I went almost 10 months without one and then crashed even harder for a full two months and three weeks on I’m still not back to where I was.
A full month in bed where making it to the front door or having a shower wipes you out for a week is brutal, especially you seemed to have improved and felt like you were living a normal(ish) life prior to it. It really knocks your confidence when you already appreciate every little thing you can do so much and yet life still reduces you to a situation where even the smallest things are suddenly impossible.
The human mind is so versatile and adaptive it prevents you remembering how bad things can be when you are better so you don’t dwell too much, but it means the relapse is always a shock and you have to gather your coping strategies again to survive.
I understand that if ill health and relapses are still a shock that I struggle to understand after nearly 30 years of having ME, then it must be another language and world to the healthy who never have to consider their physical limitations day to day. I’m very lucky that I have friends who support me in a variety of ways that make it much easier to cope.
But the idea that support should be personalised and not pushed onto a person is still very alien to many people. They decide what an ‘invalid’ needs and don’t ask or listen to what they are being told. And they give unsolicited advice without stopping to ask if they know what they are talking about.
During this relapse, someone I had considered a friend started telling me about ‘guided meditations’ for ME. Rightly or wrongly my hackles immediately went up. I have no issue with meditation or mindfulness generally but in my experience as soon as something is for ME specifically, it focuses on the idea you aren’t trying hard enough to get well and ignores the fact it’s a neuro-immune condition and not caused by a lack of positive thinking.
I did a course of these guided meditations for ME a few years ago before I knew what the word ‘gaslighting’ was. It certainly didn’t help my ME to be told I wasn’t feeling it enough and the tone of it caused me an exacerbation of my Post Traumatic Stress Disorder symptoms to the point it took almost a year to recover from the depression it plunged me into. (Yes, the ‘treatment’ for ME in the UK doesn’t help the illness and can cause PTSD. You read that right.)
I thought I was quite clear with this person that I wasn’t up for having more of these ‘suggested’ to me but she went ahead and sent them to me saying I had nothing to fear because the woman who had devised them had ‘had ME’. I almost broke my phone at this point in rage.
ME is considered a multi systemic neuro-immune disease by the World Health Organisation causing permanent change to the spinal fluid, column, brain and immune system. It is currently incurable but can go into (long term) remission depending what form of the disease you have. But you cannot have ‘had’ it in the same way you cannot have ‘had’ lupus or MS.
I looked at this link to this Wellness Centre (I refuse to link to such a dangerous site) and the utter snake oil they are selling people about this complicated and highly stigmatised disease. It was a chronic illness bingo card from green juices, yoga, colon cleanses, toxins, mercury fillings, systemic candida (how 90s) and auras. But they could fix it for you for a cool 2k (deposit required and no refunds available. Please consult your GP first…)
And I realised this is why I fucking loathe the cult of wellness. It subtly tells you that the problem isn’t that there is no cure for chronic illness and in many cases no treatment, but that you that you are in some way deficient and not good enough instead. It ignores biology, bad luck and links between poverty, trauma, misogyny and ill health. It excuses the medical profession’s shoddy attitude to treating ’non X-rayable illnesses’ and it tries to sell you a way to be a better person because it sees ill health as a moral failing not a part of life.
It preys on desperation and fear and it mutates with the trends of the time. I was only half joking about systemic candida being 90s, but in the way that gluten is the bogeyman now, I was repeatedly put on anti-candida diets in the 90s to ‘cure’ my ME. It didn’t help because if anything the problem is turning out through detailed bio medical research to be more a lack of gut flora than anything else so right ballpark, but wrong throw.
I tried homeopathy, kinesiology, acupuncture and all kinds of supplements. Some of the people I met were genuine and kind and I was helped by the fact they paid me attention when doctors were writing me off as a hysterical little girl. They helped me find things like probiotics which the NHS is only catching up to twenty years later.
But most were charlatans who constantly told me I was lacking and that my very sense of body and self was not enough and made me feel ashamed and guilty for still trusting in conventional medicine to remove my gallbladder rather than try flushing my stones out with a pint of olive oil like they advised. I felt small and stupid and like my ill body was a dirty secret or some kind of blight to be discussed in hushed tones.
To be constantly told for almost three decades that you aren’t really ill but just not trying hard enough is an unbearable form of psychological violence which many of these people inflicted on a child to begin with and then took money for. I cannot tell you the damage those people inflicted on how I still think about the body I inhabit. At a vulnerable age I was given the impression that my body, and therefore I, did not deserve to exist.
It would be bad enough to do that with any illness but with ME it is compounded by the fact that the NHS does the same thing. It believes ME is a psychological condition where patients have false illness beliefs and believe themselves to still be ill after a initial infection. They send you for Cognitive Behavioural Therapy that tells you need to think more positively and try to overcome it.
You get no direct treatment for your ME despite in my case showing consistent issues with liver, gallbladder, bowels, heart, blood pressure and volume as well as suffering chronic pain and post extertional malaise for years. Even the chronic nausea that had me vomiting into a bin in appointments was seen as ‘all in my head.’
So patients turn to non conventional practices in desperation and insist they help so the doctors take that as further proof that ME is psychological attention seeking and they don’t challenge the orthodoxy with appropriate biomedical research in the UK, instead pouring much needed money into things like the now discredited PACE trial to prove CBT is a magic wand for ME.
Worldwide over 17 million people are affected with ME, 90% of whom can’t work and require care from another person. Around a quarter of them are bedbound and many were affected first in childhood. The disease gets less funding per year than hay fever worldwide.
Patients are left at the mercy of the wellness industry and ripe for abuse from it and then punished for turning to wellness in the first place. It is an unbearable situation and all contributes the culture of disbelief around the illness and the constant unsolicited advice about turmeric or guided meditations or cleanses and yoga.
I was so upset that someone I trusted and who has a chronic illness of their own had sent me these guided meditations that were the utter embodiment of this denial of an illness that currently had me unable to function at all that I couldn’t stop crying for a week, finally calming down enough to end the friendship and block them on my phone.
And it suddenly helped indirectly as I realised that instead of spending my money on Mickel Therapy or the Lightning Process or gluten free Paleo courses, I had put it toward long term psychotherapy with a trusted and qualified therapist who listened to me.
In talking about my illness and how it affected me and finally have my grief and loss and feelings about my body acknowledged, I had ended up in a situation where I knew there was no cure, but only a way to make the most of what I could do for myself. For me this is seek out better medical care and learn to look after myself. This improves my mental health (and physical health) more than the constant negative and critical style of wellness that always dangles an organic carrot of ‘cure’ over you if you pay more money or chase the prize harder or faster.
If you find that other options help you, then I am genuinely delighted for you but please don’t suggest them to me as unsolicited advice or push them or tell me I’m wrong if I don’t like them. Therapy has helped me and doesn’t work for other people so if you ask me if I know a good therapist I’ll advise you but I won’t tell you to get a therapist if we’re just chatting about the price of fish.
Someone once reminded me that unsolicited advice about anything is really just criticism dressed up. So for me, it’s vital that if you want to support someone you avoid it no matter how well meaning you are and you listen to what people are asking or telling you instead.
So please think again before you helpfully suggest a new diet or therapy to someone who is struggling and ask yourself if you would find it helpful in their situation. To you it might be a casual suggestion but to someone who is ill and struggling it is the straw that breaks the camel’s back.
There are only so many times you can be told to try something and get your hopes up that this never ending illness hell has light at the end of the tunnel only to have them dashed because the idea was fantasy anyway but then be told you didn’t try hard enough to believe in the fantasy. It would be cruel to do that to a child about Father Christmas but people do it all the time over illness.
It never fails to amaze me that that wellness culture doesn’t care if it breaks your mind on the way to fixing your body. But personally I find I can survive untold physical challenges when I’m not fighting my mind so I’ll stick to being kind to myself and others instead. Not only does kindness make the world go round, it costs nothing but sadly since you can’t sell it or Instagram it, it’s out of fashion currently…
6 Comments
Thank you. Really cogent, and helpful for me as a GP myself (really agree about biomedicine’s struggle to acknowledge illness that we can’t yet fully understand).
Emily: I find it enormously helpful and validating when my GP listens to me and says he doesn’t know something. We often pool his medical expertise and my expertise on my body to find answers and I value it so much. Makes me feel believed.
Kavey: I remember you having a battle to believed. There’s definitely some genuine ignorance of these illnesses people didn’t live long enough to get before now in many cases but also some good old fashioned sexism as women are much more likely to suffer from them and get treated as hysterical for it. Although all the medical people I’ve seen in the last two years (and that’s a few) have all asked about a link with hypermobility and look disappointed and confused that I’m not so things are changing slowly. Much love xx
Alicia: ha, it’s one of those terribly upper class English names and never fails to make me snigger.
Having experienced a small fraction of this, including the insistence today my physical symptoms were in my mind and been told to go to CBT, I truly truly understand how incredibly upsetting it is not to be accurately acknowledged, let alone helped. It’s mentally torturous and exhausting. And yes, well meaning busy bodies are unbelievably infuriating and upsetting. I don’t have any clever ideas for you or anyone else. I do have love and hugs and sympathy. ❤
This reminds me that in the 90s my GP’s daughter was called Candida.
Great article, thank you. Sometimes i think complementary therapies can help a bit, if you see a decent therapist (and can afford it), but yes there are alot of people who just want your money. There’s also the egomaniac types who think because theyve got a diploma in something they are ‘healers’ now. These are the most dangerous ones i think as THEY actually believe their own bullsh*t. I did the Lightning Process about 10 years ago, out of desperation. I think it was £650 or something. It was the worst thing i ever did as it helped for a bit, but then it stopped helping, and i was back to square one, more ill, more depressed, and considerably poorer. The guy who taught me it probably wouldve said i didnt try hard enough, or didnt want to be well. Ugh. Anyway, i share your anger and thanks for the article.
Lucy: I’m so sorry to hear someone who considers themselves a healer harmed you by telling you it was your fault. That’s cruel. But I know the desperation involved in wanting a better quality of life with chronic illness. I tried all kinds and spent a lot of money that would have been better put toward feeding myself well and being able to turn the heating on without worry. Those things mean more over the long term.
And I have been helped hugely by probiotics which are still seen as ‘woo’ by some doctors so I don’t believe wholeheartedly that ‘real’ doctors are better sadly. The ME paradox…