How to explain the 'fatigue' of ME/CFS to non-sufferers - comparisons they could understand

Yes, one of my stock answers is "Fatigue has nothing to do with it!!!!!"

 

Thinking about this, the fascination with fatigue as a concept for this illness is the average healthy persons interpretation of our situation. We feel ill already, and we start each morning with a lower amount of energy available to us than a normal healthy person does. We don't have a lower amount of energy available because we are fatigued, we have a lower amount of energy available because that is the normal for us. For a normal healthy average person you don't compare their available energy reserves to a competition-level marathon runners available energy reserves and then declare that the average person is fatigued because they have lower reserves, so why apply the same principle to us?

 

It's always the same for me - lower energy and weakness. When bad, add to the mix a feeling of being really sick (as in unwell, food poisoning or norovirus or bad flu weakness). That's how it is for me.

 

The way I see it it's not just about having less energy available (which is very true nonetheless). It's that the much reduced amount of energy that is available cannot be used as quickly as it is needed. Not just less fuel in the tank, but even the fuel that is in there cannot flow anything like as fast as it once used to. So for a car, then not only is its distance much reduced from before, but it can only travel it much more slowly.

 

No, that's not how I would describe my experience. Best description of my experience would probably be that of fuel being burnt inefficiently, so the energy "tap" has to be open far wider to achieve the same result that healthies would achieve, and obviously that burns through my already limited store of energy very quickly.

 

Actually, I'm getting to the point where I don't really care if people understand what ME feels like - partly because I don't think it's even possible for them to properly understand, as I explained in my previous post - but what I do care about is that they accept my word when I say I feel lousy.

If somebody with MS says to me that they're feeling wiped out do I ask them to describe their symptoms in detail so I can judge whether they really are wiped out or just dramatising normal fatigue? Do I ask a migraine sufferer to precisely describe and rate their pain and other symptoms before accepting that maybe, just maybe, they really don't feel all that well? No, of course I don't. I ask them if there's anything I can do to help, get something from the shops or take the kids off their hands for an afternoon for example (well, that's what I used to do in the past when able to offer such assistance...).

It should be the same for ME. If I say I'm sick then I am sick. End of story.

 

This

 

Yes I very much appreciate that.

I was coming at it from the perspective of advocacy, where it unfortunately does still very much matter.

 

In terms of cognitive fatigue, and my easily getting overwhelmed/exhausted by sensory information, I tell my family that my brain is like our old Windows computer which worked slowly and would freeze and stop functioning if you tried to use it like a 'healthy' computer (if you tried to make it run multiple programs at once, for example, or if you clicked on several things in quick succession).

 

More like it's the wrong type of fuel in the tank maybe?

 

Probably easier to say what it doesn't feel like.

As a child I remember being really ill and one morning, feeling a little better, hopped out of bed to go to the loo. My legs were to weak & I hit the deck. Doesn't feel like that, because they didn't feel weak till I put my weight on them.

Anaemia - the tiredness is more "pure". Although it comes with headaches and cold sweats too. Doesn't feel the same.

Hypothyroidism - some similarities, but no still feels different.

Too much levothyroxine - nope, doesn't feel like that either.

As a teen I used to play the odd 24hour sports marathon plus a 5 mile round trip walk to the sports facility and back. You would play a couple of hours, take a break and play again. By the end you were bone tired and the feeling that someone has dialled gravity right up is echoed in how I feel - especially in PEM. Mind you, after food and a few hours sleep I'd be up & off to a party.

Post freshers week hangover - a horror that lasted days. Especially, after that homebrew when we ran out of money. Yeah - poisoned, that's part of ME.

Glandular fever- yep. That's a subset of it.

So, I would say it feels like a combo of increased/abnormal fatigue-ability gravity turned up. Or perhaps gravity turned up in a high altitude environment. In addition to having just excessively exerted yourself while hungover & with a bad flu.

 

I think there is an inherent issue with trying to describe how something so abnormal feels using descriptors a healthy person might feel/use.

The danger is they'll judge fatigue as how they feel on Monday morning rather than the poisonous, painful thought obliterating experience of ME. It will inevitably trivialize the condition as they'll think "well, yeah, I get tired too".

I think what you're trying to achieve here is a good idea @Barry, but wonder if there is another way of going about it.

 

The more I mull this over the more I agree with @Ravn. Why should we be obliged to describe, in detail, exactly how having ME feels?

Are we, in fact, playing into the BPS narrative by even attempting to describe how it feels. Using words such a tired, fatigue (I avoid those), pain, exhaustion etc. will be parsed through the lens of the listener's experience. Unless they have ME, it is simply beyond their experience.

After all I've never given birth, but I have no doubt it hurts. A lot. Similarly, I have no idea how it feels when a gentleman is kicked in the ..... trousers. Fairly certain it hurts though. I don't really need a description.

I have read very well written accounts of how it feels, where the author has used language imaginatively. It might be effective for someone who already understands, but can also seem....more emotional. I'm not sure that helps us.

Would it be better to focus instead on what it prevents a person from doing in their day to day life?

 

It's not really about obligation. With advocacy it's about what works, and what doesn't.

 

Yes. That is true. However, for some reason many of us find ourselves being pushed to give descriptions of what it's like. Almost as though we should be justifying why we can't just do stuff.

Thinking it over I think that advocacy that focuses on describing how it feels might make that problem worse.

Also, how relevant is how it feels? For example, I have known someone with less than three months to live with terminal cancer who still went to work every day. The employer didn't expect them to - they felt able to & preferred to just carry on. Yet someone who might have the flu can feel very sick but will probably be just fine in a week or so.

 

I know, I know. I just get a bit cranky at being put in the position of having to justify calling myself ill.

For advocacy, I just had the same thought as @Invisible Woman, maybe it would be more effective to focus on functionality - or rather lack thereof - than on trying to get across what symptoms feel like (which, as I keep repeating myself, is probably impossible anyway, even if the other person is trying hard to understand). As in too sick to work, too sick to walk to the mailbox, too sick to have a shower, too sick to eat, etc.

Or maybe it needs to be walking to the mailbox makes me (even more) sick, having a shower makes me (even more) sick, talking on the phone makes me (even more) sick, etc. to account for the delayed PEM effect that's so hard to comprehend and to accept for other people.

I'm also trying to find a way to explain the ME paradox of the harder you try the worse you get, in a concise and easily understood manner.

 

My first sign of ME was the feeling that I was coming down with a flu: achey, the feeling that if I bumped into anything I'd feel pain all over. lethargy, and just plain feeling unwell and wanting to crawl into bed. It felt exactly like previous flu infections. The symptoms have changed over time, and I can't remember what feeling healthy is like. I would have severe trouble trying to communicate what my present symptoms feel like, since 'it's like the flu' is no longer quite true. As someone else responded, 'sickness behaviour' is simple and probably fits best.

 

I use the cell phone analogy all the time, to explain my sense of lack of energy. I remember when I waked in the morning, half asleep and then sudden I would wake up, have a clear mind and get ready for my 3 mile walk before breakfast. Not anymore... I go half asleep the whole day, no more than 25% battery level, with several daily crashes when I can barely walk or talk, then I tell my wife, "my battery is near zero, I will take a recharge nap".

 

https://www.s4me.info/threads/exerc...ness-2020-washington-et-al.13542/#post-235810