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Why I Am Not Happy With My ME/CFS Diagnosis

Two weeks ago I was diagnosed with ME/CFS. It didn’t come as a surprise; it was obvious that that was what I had. Two members of my family have had it for a very long time, so I know most of what there is to know about it.

And I was pretty upset. Which surprised me – after all, I knew the diagnosis would be made at some point, and I didn’t realise my feelings about my physical health would particularly change after it was made official. But they have. I feel worse; much worse. It feels like the next nail in the coffin, a death-knell, the beginning of the end.

And yet, that isn’t what this post is about. It’s about other people’s reactions to the news, which have been astonishingly unhelpful and seem, in essence, to say that I ought to be glad that my ME/CFS has been officially diagnosed. Well, I’m not. Here are some of the things people have said and why they aren’t helpful.

I’m sorry you’ve got this diagnosis but…

  1. … At least now you’ve finally got a diagnosis.

News Flash! A diagnosis of ME/CFS means you’ve got the fatigue and various other symptoms, and basic blood tests haven’t brought anything else to light. It was established that I wasn’t anaemic, had only one vitamin deficiency (now rising), and that my liver, kidneys and thyroid were all functioning normally. I had been suffering the fatigue for a year and had some of the other symptoms of ME/CFS. There were no other investigations.

  1. … At least you’ve got some answers now.

Actually, no. This isn’t a diagnosis that brings answers. Nobody knows what causes ME/CFS, and there are no effective treatments, let alone cures. CBT has been shown to have no effect on the condition, and Graded Exercise Therapy was touted as a miracle cure for quite a while – in fact, some people still believe in it. Since then, though, it has been proven to be harmful rather than beneficial. And it’s not a very interesting illness, so there’s not a lot of money given to researching it. So nope. Not a single answer.

  1. … At least people believe it’s a real illness now.

Well, most people, anyway. Even most doctors. But you’ll forgive me, I’m sure, if I point out that that’s not an enormous comfort. I’m sure it is to many sufferers, particularly those who had the illness before it was conceded as a reality. And yes, it’s definitely a step in the right direction. But it doesn’t make me feel any better about having received the diagnosis. Honestly? It feels a bit like a crumb from the rich man’s table.

  1. … At least now you can get some treatment.

See answer no. 2. There are no effective treatments. There is hardly any knowledge about the illness in general. In fact, the opposite is frequently true: it is the experience of many sufferers that doctors ascribe any symptom or decline to their ME/CFS and don’t bother to investigate further or even treat the symptom unless the person insists – which, of course, many people with the illness simply haven’t the energy to do. So now that I have this diagnosis, I’m actually less likely to receive treatment than I was before I had it.

  1. … My friend/family member/colleague had it and they’re fine now and have married a millionaire.

Ok, so only one person actually said the marrying a millionaire thing (but still, why would you think that would make someone feel better?). A LOT of people say the rest of it though, and guess what? It doesn’t help me. Sure, some people do recover, or recover to the extent that they can lead a more or less ‘normal’ life. But many other people don’t recover. Lots are housebound; many are bedbound. Some people die from the illness. In my family, the two people who have ME/CFS have both had it for over a decade. I know the reality here, and the fact that you may know someone who is better than they were doesn’t help me.

  1. … you can get better, you can recover, so you will.

Do I even need to explain this one? As in the previous answer, yes, some people get better, but by no means everyone. Unfortunately, so little money is invested in ME/CFS that there are no reliable statistics available as to how many people make a full or partial recovery from the illness, so I can only go on what I have heard and seen, which is that some people recover and many don’t. And since no one knows what causes the people who recover to do so, the only thing I can do to help myself is try not to make it worse. So, frankly, to tell me that I will recover because I can is not just nonsense, but cruel, insensitive nonsense.

***

Now, I know that my experiences aren’t the same as everyone’s. I know that many people have been desperately glad and thankful on receiving the diagnosis because, for example, it tells them that it’s a real illness and not something they’re just making up. But their experiences aren’t mine.

If someone tells you they’ve been diagnosed with something, don’t say “I’m sorry, but at least…”. Just say “I’m sorry, that’s really shitty”. If they’re glad, they’ll tell you and that’ll be great. But don’t assume they are, because if they aren’t, it will make them feel worse.

2 comments

  1. Those reactions suck. I’m so sorry sweetie. No one would ever say to someone with cancer “at least you have a diagnosis now”. People suck. I’m sorry that you have ME I wish there was something I could do to help.

    Like

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