Please, lie to me

A few weeks ago I was referred to the local hospital’s gym. My experience has been so absurd that I’ve decided to share.

I was seeing a GP (again) and once again I was treated with the normalising talk. To be honest, I was at the end of my tether. I really stopped caring. After seeing yet another carefully studied pained expression and the ‘oh well, life is so tough’ spiel, I really just wanted to go. The medic felt it, so I got the “Is there anything else?” question. No, it was not an invitation to offer ‘my experience’, it was an invitation to go. Not just yet, I thought.

And I said, how about getting me help to become active again. After all, I did hear of the PACE study and for all its problems (no, I’m not going there), I thought it was a good idea to have a go. Oh if looks could kill, but, face momentarily under control, intensive processing done, and I heard: Yes, it’s a good idea. No, I didn’t ask: If it’s such a good idea, why did it have to come from me? I didn’t want to jinx it.

Two weeks later, I was having a conversation (in fact it was two conversations, but bear with me) with the gym manager and I was pulled into some strange reality I really didn’t want to know. Let me put it politely, it’s (again) a story of my failures. I am the worst and I almost apologised for it.

First of all, I didn’t have any ‘heart condition’. I did mention my hypertension, but I knew I was scraping the bottom. The manager looked at me in disbelief. I almost wanted to say I had had a five-bypass operation to make her happy. So, why on earth was I referred to her gym? Well, I said, it’s CFS. Eh? Wassat? Chronic fatigue syndrome. Oh, I don’t know anything about thaaaat! I wasn’t certain whether she was just being dismissive about the condition or me. No, I didn’t enquire.

Oh, I see, I said. I was told by my GP you would be able to help me back to activity. Oh, noooo, she said, we’re just exercise supervisors and we don’t really know about such things. Ahhhh, I said somewhat bewildered by the conversation. Should I now just get up and leave? Apologise for wasting everybody’s time? Not being able to decide what to do, I decided that I would just continue sitting in front of the manager of the gym where I was apparently getting help, despite the fact that she denied any knowledge of anything. Help did come though. The gym manager decided we still should do the forms. Her disapproving look came back very quickly when I couldn’t answer the questions.

For example, she wanted to know how fit I was. I don’t know, I said. Apparently I had to know, so I decided that after 25 years of intensive running and exercising I was still fairly fit. Bloody hell, when I said it, she looked at me with so much contempt….Surely, I heard, you didn’t mean it. Didn’t I, I thought, afraid to say anything. Well, why don’t you put whatever you think is best, I said. I think I gave in without enough contrition, so she agreed only grudgingly.

Then came the question I thought I could answer. What do I want to achieve in the gym? I want to get back to physical activity, I declared happily. Alas! No joy! Apparently, that wasn’t on the form, so I couldn’t want that. I was fantasising about me saying ‘Yes, I can!’ and her saying ‘No, you can’t!’.

  • Yes, I can.
  • No, you can’t.
  • Yes, I can.
  • No, you can’t.
  • Yes, I can.

This was getting quite bizarre and, to be honest, I was beginning to wonder whether I could just laugh. Anyway, the manager suggested losing weight, I happily agreed. Why don’t you read me the options and I’ll tell you which to mark, I said. I tried to look hopeful and obliging. We agreed to five more (they escape me). I think it might have redeemed me.

Anyway, despite my inadequacies, I was admitted to the gym (I’m not certain whether I could have been refused, actually, but there you are) and a week later I had my first appointment with my personal ‘exercise supervisor’. I was met with a broad and very friendly smile and a compliment that my body looked very fit, which was followed immediately by the statement of inability. She did know about my CFS, but unfortunately, she knew nothing about CFS. The exercise supervisor seemed genuinely sorry. But she decided, some weights wouldn’t hurt anyone anyway and that is more than likely to apply to me too.

This was the first time I thought: please, lie to me. Just lie, lie, lie. Through your teeth. Tell me that you’re in the process of reading up, that you will find out, but stop telling me that you know nothing. No, it’s not that I felt like nothing, my ego is too strong for this, but you know, it is fairly disheartening.

And so, willy-nilly, I shuffled along to do some weights. No, nothing fancy, just your regular upper body training, except every time I said that I thought I needed to keep it really low-intensity, I was greeted with some poorly hidden disbelief. But yes, I understand, if someone looks like they could take a cow under the right arm and a horse under the other, pulling a truck for good measure, it’s tough to think they can’t press 20 kg. Oh, words cannot render how fed up I am with explaining.

The second session was better. The trainer greeted me with confirmation that we should do low intensity weights. Because this is what you do in fibromyalgia and fibromyalgia is like CFS, isn’t it? As I was singing ‘Strangers in the night’ in my head, I also started considering a revolutionary training programme for NHS staff. I would call it, wait for it, ‘The Google search’! Because, for example, if you put ‘NHS’ and ‘CFS’ into the Google search engine, you will find this website which will tell you a little bit about what you can do about chronic fatigue syndrome. Nothing fancy, but you know, a little bit. Anyway, we went to do the weights.

On my third allotted NHS-paid session, I was told that I could do the weights on my own. The personal trainer seemed to have some pressing chatting to do with another trainer. Must have been funny, because they laughed their socks off.

I still go to the hospital, I do the low-intensity weights. Do they help? I’m not sure. They might, actually, but that’s for a different post. I must admit, however, that the staff’s continual rejection of any engagement with CFS infuriates me as much as it hurts. I do understand that CFS is invisible, but, you know, you would hope that healthcare staff will at least pretend they understand. I also wondered how they did it in the PACE study – how did you get the ‘exercise supervisors’ do google CFS?

Importantly though, I’ve been told the NHS is paying for my gym and they expect some real improvement when I do the end-of-gym form with the gym manager. This is crucial as I do need to be value for money. I also have a  feeling of being in a Kafkaesque reality in which no one knows anything and what really matters is the FORM. But as the lovely (and mostly elderly) gym members deserve their place to exercise, chat and wink at each other (there’s a lot of winking), I will not ruin it for them with my inopportune comments about invisibility of CFS, looks being deceptive and not all men coming with a ‘heart condition’. Incidentally, in a couple of weeks’ time, I will have another personal session. My goals will be reassessed and I’ll find out what I can and can’t want. The form rules!

But I want to end with today’s session. I was greeted, as usual, with a friendly smile of a trainer serving as a receptionist, who after consulting my ‘gym profile’, took my pulse and asked me about ‘having any symptoms’. What are you on about, I thought. But then it dawned me – she must be referring to my my non-existent heart condition. I’m a man after all! For a couple of seconds, I was considering…Nah, I thought, there is really no point, I’m too tired. I looked at her with the best smile I could muster, and reassured her that there were no ‘untoward symptoms’ (quite enjoying the phrase, I must admit) to worry about.

As I walked towards the weights, I was reflecting on the idea of patient-centred medicine. I laughed out aloud.

 

6 Comments
  1. Hey, Darius – Re. going to a gym with an ME/CFS diagnosis – you could do yourself great harm, no matter how fit and active you were before. I think John, above, has given you v good advice. All good wishes, NASIM

    1. Dariusz Galasinski

      Thanks, Nasim. There is a veeery long post to be written about why and how and what for. I have never ever been so frustrated and powerless and …in my life. Seeing a person running in the street, you know, just like that, just pains me. I’d better stop here 🙂 Thanks for your comment.

  2. Dariusz,
    I’m sorry to hear you’re unwell. And it is very accurate to describe ME as an invisible illness.
    As you are probably aware I think PACE found no evidence for the effectiveness of GET. I do not recommend trying to treat ME in this way.
    However, if you do want to try GET, then it is not simply ‘exercise’. It involves establishing a baseline of activity and then increasing it over time. Simply to start exercising more is not recommended by anyone.
    I would suggest that you contact the local Physiotherapy/Rehabilitation Department at your local hospital (mine has drop-in clinics) and ask if they can find someone with experience of ME to help you to develop a proper programme.
    Feel free to contact me if you want more details.

    1. Dariusz Galasinski

      John, thank you. Yes, I know about PACE and its controversies.
      What you say is just common sense, isn’t it? At least one would hope so.
      To be honest, I had never, and in my wildest dreams, expected such a wall of complete lack of interest and engagement.

      I’m not yet certain what I will do with the exercise. At the moment I do it at the level so deep under what I used to be able to do that it mostly frustrates me. There is much, much more to say about this.

      1. I think that’s a very interesting point. What is the difference between GET and a common-sense, maximized-pacing approach? My suspicion is that in clinics run by experienced providers and in the closely observed conditions of a clinical trial – nothing. But when patients see less well informed practitioners who see it simply as ‘exercise’ – a very great deal. Of course, the researchers can’t accept that GET has no active part to it and that all they’re doing is helping people to manage the effects of their illness, because then their false belief model has nothing to support it. If you’re interested, I can recommend Tom Kindlon on GET in PACE. http://journals.sagepub.com/doi/full/10.1177/1359105317697323

      2. Dariusz Galasinski

        I agree with you entirely. What is really annoying in my experience is the ‘exercise’ approach. Exercise is good, so let’s exercise. Moreover, at the beginning I had to ask for things to slow down (which is hard – I am impatient). It was a struggle – the well-meaning and smiling trainer notwithstanding. I could probably write a guide to CFS exercising for ‘exercise supervisors’. I would start with – take this disbelief look off your face. Thank you very much for the reference. It’s very useful!

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