I am often in physical pain with my ME/CFS – but unless I’ve really blown out and am suffering bad PEM (post-exertional malaise), the pain is just the kind of generalised aching, like you would get if you had a flu. Also sometimes a bit of stiffness, but I do stretch and try to walk that out, so that isn’t such a concern. If it is PEM, I will overall feel exhausted and sick, but often the part of me that I have used too much will ache a lot and feel weak – i.e. a few weeks ago I scrubbed my bathroom walls with vinegar to prevent mould (thanks to having no extractor fan) – exactly 48 hours later, my right arm, hand and shoulder were sore and swollen. The only fix for that is rest.

But every few months I feel so bundled up in knots, and just generally stressed and deprived of human touch (yay for my loser life) that I desperately hope I have package bonus on my shitty expensive private health cover that covers nothing (it is truly a government-backed scam) and decide to go get a massage to make me feel better.

Though it doesn’t always work out that way.

As soon as massage therapists find out I have CFS, and as soon as I get naked on a table in front of them, some of them decide it is time to impart their own wisdom upon me about what I should be doing with myself or to grill me on what I have tried.

Earlier this year, after our conference that wiped me out for quite sometime (I am already feeling super stressed about our next one in Feb next year), I went to get a massage as I was in heaps of pain.

Once I was facedown nekkid, the therapist started lecturing me about how I should bathe in magnesium salts, unperturbed when I told her I didn’t have a bath and already took magnesium supplements. She went on and on about this. She then asked me if I ate gluten, which apparently (according to no science whatsoever) I should stop, because her friend did and it gave her so much more energy. The usual grilling on what I have tried, and asking whether I sleep (yes, a lot) and asking if I have been tested for sleep apnoa (yes, I don’t have it) and asking if I eat lots of wholefoods (yes) continued, even as I awkwardly rolled over while using my forearm as a makeshift bra so she could do the front. It was all finished off by being told I should stretch (which I do).

The massage in isolation was relaxing but the talk really wasn’t.

So yesterday, desperate for a massage, I found an appointment somewhere else. As I’ve written I’m really nervy about appointments of the medical nature lately, but my muscles were so sore and tight and I felt pretty miserable (not helped by getting a dent in my new car thanks to a runaway Coles trolley, leading to some stress tears in the carpark) so I just felt like I couldn’t get by without one.

This time the therapist told me ‘does massage’ but she is also a Chinese medicine practitioner and acupuncturist, which I thought was interesting as acupuncture is something I would consider trying. But as soon as my clothes were off and I was face down, a lengthy sales pitch/lecture/grilling ensued, much of it based on an underlying presumption that I’ve been too lazy to have fixed my own illness, and that ‘three years is too long’ and ‘you have to try the herbs to lose weight’ and ‘massage only superficial, only herbs and acupuncture can really fix’. At the risk of resorting to stereotypes, the lecture felt very ‘Tiger Mom’ and I was basically pushed into making an acupuncture booking — but I’m not sure if I will follow through because of being broke and just not sure if I want to spend more money on this stuff.

Unlike the other masseur, this person was less able to concentrate on what they were doing while lecturing me, so only ended up massaging the parts that I said were most sore, when I was actually sore all over and said that pretty clearly. Now some parts of me are massaged to a painful pulp that will hopefully give way to relief, while the un-massaged parts (my arms, wrists, front of shoulders, ankles and hips) seem to have gotten even more tense and painful. I barely slept last night because of pain.

I miss my time in Indonesia when getting a massage was affordable, and a relaxing treat (most of the time – I had a couple of flops and weight lectures there too).

I have no doubt that the advice the masseurs were giving me was well meaning. But do you think I haven’t tried as much as I am able to after nearly three years of being ill? And that maybe, because I am ill, I might be wanting a little bit of care and compassion? ESPECIALLY WHEN I’M NAKED?

This is one of the problems with the stereotypes of ME/CFS combined with the whole wellness culture that is so ‘on trend’ right now – it presumes that if you are ill, you just haven’t tried hard enough to get well. It’s such an unhelpful rhetoric.