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Myalgic Encephalomyelitis Community
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If you have an illness like cancer, and put a smile on your face, everyone says " how strong, how brave". If you have an invisible illness and smile, everyone thinks you're fine! The professionals especially place emphasis on negativity and CBT and I truly get its importance, but I have had m.e (diagnosed) for seven months now. I am a really positive person who believes she will get better, but sometimes I am so terrified of smiling for fear of people thinking I am fine and no longer need help. I haven't posted on here before, I hope no one minds me sharing my thoughts.

11 Replies

You are spot on!

I complain regularly as I look well but am unable to do much and feel that I need to remind people I am not well. Some relatives tell me I need to man up and get on with it, (and that is bloody impossible when at certain times I barely have the energy to put one foot in front of the other.

Some do seem to understand but will tell me I look well, (I may look like a million pounds but feel like 3.5 pence :(

The reality Spingirl is that the problem lies within ourselves - you know you are not well as do I - I struggle to do over a day what I would have squeezed into an hour or two after work - so I know its not laziness or malingering.

Best advice I can give is to talk with those close and explain how you feel if you can convey a little of how crappy this all is I am sure your friends and family will understand. If not - we will.

Good luck.

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Just back from Dr - who told me I was looking very well - insinuating improvement although things haven't been good as I have tried to increase activity and have ended up loosing 1/2 a stone as I've been to tired to look after myself!

It is very frustrating.


It is VERY frustrating as you don't want to sound like you are moaning all the time. Please be careful Raffs. Xx


Thankyou. I do agree I am my own worst enemy at times as I try and push through, but just because I don't want to be a burden and I don't want my children to think this illness is all I am now. I will try harder to convey to them. I appreciate your reply


I think one of the best things we can do is to enjoy everything as much as we can. Those that really know us will understand that the reason we can be seen out in public laughing and smiling is because we've had to rest up to be able to do that basic social interaction.

I understand where you are with the kids as I keep emphasizing to mine that when I get better I'll be able to do more, etc. The Dr tells me the best thing I can do is stay positive, take my victories where I can and keep distracted. We just need to make sure we are distracted thinking what other people think!! Which in reality is a reflection of our own views of ourselves!!!

Take care


Hi, I've just been diagnosed with ME/CFS and am finding it difficult to be taken seriously, so I too worry if I look happy etc that it will affect how people view the illness! I am new to this site and not posted before so any tips on being taken seriously and getting people to understand what is wrong would be greatly appreciated.


Hey brownie 123,

I know exactly how you feel it's a daily struggle to get people to understand. My idea is to pity those who don't understand it's not your fault or there's.. It's impossible to truly know unless you have experienced it yourself. Try and remember the time when you didn't know what it was.

Cherish those few that do get it.. forget the ones that dontMe.. Members of my family that understand are few and far between.. My nana didn't understand until I had no one to come to my PIP assessment and she listened to every detail.. That is how difficult it can be. I see it the same as a child not understanding something, iin the likeness that it isn't your fault.

We just have to keep in mind we know our own struggle and if we drop the front and open up some people can understand. Some people just dont have the capacity for empathy and never will.. when they don't it's down to them.

Maybe print out online details my friends that do support me still ask questions. And ones that truly care look it up. Don't feel disheartened

If it's in relation to a job or anything you do have the right to be taken seriously.

Take care of you x


Thankyou for your reply msBrightside. I will certainly print some info off and hand it out to close relatives. Sometimes hearing from elsewhere is all people need to believe in it. Hope you're well, thanks again xx


You're welcome good Luck!

I really hope they do understand, It makes all the difference to have even just one person show compassion.

All the best xx


Hi spingirl

You are completely free to feel that way. I've had doctors say to me 'you look well to me' when I struggled to get a diagnosis.. I have felt the same comparison before we do actually have some of the same symptoms, obviously it isn't the same thing and we're lucky not to have a life threatening illness just to clarify to anyone who might take offence. Our quality of life is what's affected but we can get better :)

I often remind people "Ehm... I do have a chronic illness" my advice is don't worry about it. It is a hidden illness and you have every right to tell someone that.

Hugs x



I agree with all these comments. I've been off work with CFS/ME for over four years now and I'm certain I was developing it for quite some time before that. I've recently had several relapses and stressful episodes and have just been moved from the work related activity ESA group to the support group because its means my condition is declining. And yet I still get people telling me how well I look.

It is extremely frustrating - if you let it be. And after four years I have just about learned not to let it get to me. Just say something like "yes, its' amazing how well I look considering how ill my chronic illness makes me feel" or words to that effect. Try to make people understand but don't try too hard otherwise you are only going to stress yourself out, and then it makes you feel worse. If they are interested they will listen. If not, why are you even bothering with them, they clearly don't really care (harsh but true). Concentrate on looking after yourself with the help and support of those who at least want to understand and care, you won't have the energy for anything else.

Take care.


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