ME, Myself and I: ‘How Well Are You?’ Scales

Recently I had an appointment with a nurse for something unrelated to ME and one of the questions I had to fill in before I went was to rate myself ‘on a scale from 10 to 100 where 1 is the worst possible health you can imagine and 100 is the best possible health you can imagine’. That was just too hard, I ended up going in without an answer in that one and came up with around 50 just because I didn’t know what to say and it didn’t seem that important for what I was seeing her for. That particular one is probably the least helpful I have read, everyone’s ‘worst possible’ and ‘best possible’ are probably different and having 100 in between is just so many points in the scale and there are probably only a small percentage in either end.

I don’t know who came up with these things, and I guess they do serve a purpose, but the ‘how well are you’ kind of scales just annoy me. I’ve seen so many versions of this from smiley to frowny faces, those 1 to 5 ones with strongly agree and strongly disagree and ones where you just have to put a number in. I’m not a huge fan of the ME ability scales that the ME charities have as well, they’re more specific but I never fall into one category and they don’t have one for cognitive and one for physical energy. I find I’m probably around the 50 mark on a lot when it comes to cognitive but physical I’m probably around the 35 to 40 and that’s a big difference with these things when they want to put you in a little group.

I guess these things do serve a purpose, they probably do tell the doctors how we feel in an easy way and make nice neat graphs but I find these things so hard to answer because I really don’t know where I fit into them. I could answer for an average day where I can do some OU work, make my own lunch and have a shower, but then that’s a totally different answer to a day where I’m feeling great and go shopping or a day when I’m so exhausted and achey I can just about make it downstairs before I have to rest on the sofa and don’t get back up the stairs until bedtime.

I have done some for ME specialists where they do have ‘on a good day’ sections and the same again ‘on a bad day’ which seem like they fit a lot better. That’s one of the problems with ME in general though, we just don’t ‘fit’ the general questions and answers in the NHS questionnaires. We don’t have one spot that hurts or one specific symptom that can be cured and we’re all better so our answers to these things don’t really fit with how we actually are at our worst or our best. At least that’s what I think. There’s not much we, or the doctors asking these questions, can do about that though. It’s just another thing we sort of accept.

If I’m being totally honest one thing about the ME ones specifically, which are a lot more on point and in detail about the ME symptoms, is they remind me exactly how much I have had to change my life and what I think of as normal now is definitely not what anyone who was healthy would call normal. It reminds me that I am not in the very smiley, 9/10, 80%, strongly agree/disagree section, I’m just somewhere in the middle. Normally it doesn’t really get to me, I’m used to it, I’ve had 10 years to get used to it and where I am now compared to 5 years ago is a big improvement but when I see these numbers and have to say that actually I can’t do this or that and I need help with something else then it doesn’t exactly make you feel good.

There isn’t that much point to all of this, I just got frustrated with that one question and decided to make a post and see if anyone else has the same problem. And probably mainly to ramble and rant a teeny bit. I do actually have an ME post planned but it’s about warm weather and so far, apart from a random week, here in the UK we really haven’t had much so it seems a bit off topic. I might do it anyway soon though.

2 thoughts on “ME, Myself and I: ‘How Well Are You?’ Scales

  1. Really interesting thoughts. Not a rant or a ramble but really great point that we simply recalibrate our understanding of ‘normal’ to meet our changed circumstances. It’s sort of necessary in order to live, but you’re right that it makes all these scores so subjective. I often found I forgot to tell my doctor things because they just stopped being significant to me, they were simply my new normal.

    Liked by 1 person

    1. Thanks 🙂 I think ‘normal’ seems to change a lot as we get better or worse as our average days change. I’ve done that at doctors too, especially if it’s a different GP, I forget that they don’t know about my everyday problems that have just become part of life every day.

      Liked by 1 person

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