What not to say to someone with CFS...

Brain and nerves
1

Hello, I'm new to the forum but not so new to CFS - I've had it for two and a half years now. I don't really expect people to understand it (I didn't, until I experienced it for myself), but there are some things that people say that really push my buttons! I know that they are just trying to be helpful, and I do try to take it in that spirit, but it's not always easy. I was wondering if other people feel the same, and if anyone has any other examples of 'what not to say to someone with CFS'! smile

From the medical profession:

Dr A: The trick is, you have to WANT to get better, then you will.

Dr B: You have to stop being so focussed on getting better. This is what God wants for you, you just need to accept that.

Dr B: You just need to accept that whatever your dreams are in life, you won't be able to achieve them. I don't understand why you're getting upset?

At the workplace:

Boss (on first being told I have CFS): Oh. I don't believe in that.

(I should stress though, she is a brilliant boss and has been very supportive! Her first response just took me by surprise - but at least it was honest!!)

Socially:

"Oh, I bet if you tried X it would sort you right out"

X being (amongst a thousand and one other things) - dairy free, gluten free, paleo diet, vegetarianism, organic only, flax supplements, nutribullet smoothies, tumeric supplements, iron supplements, berrocca,..

You know, because there is a really EASY answer to this, that we're just all missing wink

Oh dear, I'm worried now that this post sounds too cynical and complaining!! Although I do sometimes get wound up, I'm getting much better at smiling and ignoring well meant advice. On good days, I can look back and get a laugh out of some of the daftest - so I hope one or two of the above has struck a chord with some of you and made you smile! smile

2

Hi there,

I just wanted to share that I have a friend who told me voluntary work would help. The ironic thing is that they now also have CFS/me and KNOW how ridiculous that suggestion was ! We're both moderate to severe with it and can't work ☺

3

"Oh, I bet if you tried X it would sort you right out"

In my case, folks say, "oh all you need is some marijuana/cannibus oil." as if it's some wonderful, cure-all elixer. If I've heard it once, I've heard it 100 times!

BTW, I finally gave into peer pressure trying multiple caniinbus options, only to have it make me physically ill.

4

Oh that's made me laugh! smile People mean so well don't they, I wish there was a good way to really explain it to them - other than them experiencing it themselves of course!

It reminds me of the exercise one - when you're told "you know, exercise is hard at first, but just push through and you'll get better in no time!". Sigh. wink

5

Thank you for that. It had me in stitches. Yes, we've all been in receipt of all those jems and lots more too at some point or another. I love the Dr A's one. Yes I WANT to be a millionaire 10 times a day every day..........................but there's so sign of me becoming a millionaire regardless of how much I WANT it.  

KEEP ON KEEPING ON GIRL - A SENSE OF HUMOR HELPS TOO.

6

Not cynical at all, Victoriajane! Peoples' responses to CFS/ME are outrageous. I've become so tired of hearing them that I've quit telling people that I have CFS. I hide it and try to pretend that I'm fine around most of the people that I interact with on a daily basis. The only people I share this debilitating condition with are the people I'm very close to such as some family members (not even all of them understand) and close friend (I'm very selective).

The most upsetting comment...

"I'm exhausted, too when I don't get a good night's sleep!" They have no clue that we feel like we haven't slept for 24 hours and feel like we have been hit over the head with a bat when we wake in the morning. 

I feel best during the evening hours, by the way! I wish there was an easy answer to this and we could fix this. It is so frustrating! How can we possbily feel this bad without an explanation for it??? I didn't believe this condition existed before I was struck with it either. Good luck and keep trying to get a good laugh out of the ignorant comments! KPD

7

Yes , just push through it seems a constant comment ☺

8

I love being told how it might be something simple like migraines, Lyme disease. Like I have not seen or spoken to the doctor almost every two weeks for the last two years but someone with no knowledge can suddenly diagnose that it is not M.E. The most unfortunate part is when you have a good spell and everyone assumes you are cured and then sighs when you have a bad spell again. You are completely right and you are certainly not on your own.

Personally I struggle with work as they keep saying when you are right / or we just want you to be 100% again as though the last 6 years of being ill will just disappear.

9

Hi

I'm a tad confused.  Has Cannibus been trialed or shown to be useful for ME/CFS??

10

No, it's just a dumb idea that people always suggest for whatever ailes you.

11

I've never heard that one!! smile Thank you for being a guinea pig on our behalf and confirming that it's a non starter!!

12

Lol thanks!! smile Hmmm I wonder which I want more, a miraculous cure or a lottery win... :D Yeah, probably the cure isn't it, although the thought of a new kitchen made me hesitate for a second!! :D Sometimes the lottery win seems more likely!!! :D

13

I totally understand why you wouldn't share it with people. When I finally got the 'diagnosis' from the doctor I was so pleased to be able to tell people, and be able to explain what had been wrong with me over the previous months. Turns out though that nobody had noticed anything!! I was totally stunned - it felt like I'd been walking through concrete and making so many mistakes and letting people down... But nobody had noticed anything was wrong with me! Lol. It goes to show, people often don't pick up on what's going on with others. Me included - when I told everyone at work, quite a few people came and told me they'd suffered with it in the past or knew someone who had. One of my closest colleagues also then 'came out' and said she had had it too for a few years. In retrospect, it explained why she didn't come out with us in the evenings etc. etc. but I'd never suspected anything. I think that's maybe one of the reasons that people struggle to understand (and say unhelpful things) - we can look much better on the surface than we feel!

I've been so lucky to have had such support from so many, including my best friend from childhood who had a boyfriend with CFS when we were younger - she's been able to recognize what's going on with me and reassure me that I'm not going crazy!!

It's so nice to have this forum and be able to chat with people who get it!! smile

14

It's funny but the people who I've actually shared it with have been completely shocked, too. Nobody suspects anything is wrong with us. People who I have talked in detail about CFS will often come to me months later and ask if I'm better because I seem better. My symptoms only show when I have had a really hard day-particularly a stressful one. Then some may notice that I look tired.

I'm so lucky that my husband is very supportive of me. He is really the only one I talk and complain to. I figure most people really don't want to hear about it. I agree this forum is great becasue we can all vent to one another. Thanks for sharing your experince, Vitoriajane!