Myalgic Encephalomyelitis Community

what do I do?

About 5 months ago I'd been diagnosed with M.E. after a year of different blood tests and feeling like I had no energy at all, I thought I would feel better having a label and just being able to tell people there is a name for what I have. But it seems it hasn't been as good as I thought, people just don't seem to understand that what I have is an actual condition, they just tell me "your just lazy" "go to bed get more sleep" . Why can't people understand? I've gotten to the point when I start to feel like it's only me in this world that knows what it's like to have M.E. and I've lost the enjoyment of meeting up with my friends. Everything people does either annoys me or I just don't have enough energy to contribute to what's been talked about. I just don't understand what I'm meant to do.

5 Replies

You sound like me. I was diagnosed in aug this year. Thought right I know what I'm dealing with now. I'm scared of telling people because it's is misunderstood. What makes things difficult also is that for 5 minutes we may be perfectly normal and the flat on our faces. We put so much energy into appearing normal we pay for it later. I think it's all about acceptance. And I mean by us. I'm still in denial. Thinking when I'm well I've got over it. We have to accept our limitations and work with them.

I have also realised I hide myself away when I'm bad. I was out walking my kids to school, shuffling slowly and so no saw me struggling. It was only then that I realised this is why people I don't know don't get it it. They are not able to see the effects.

Maybe we should all be going out walking and feeling like zombies causing mayhem cos we are so slow. We still pay for it later. :-)

I read something somewhere that you stick with people who do understand or who at least try. Anyone who doesn't or doesn't want to, leave them alone. People don't get it, until they get it. But we wouldn't wish this on anyone.

We need positive attitudes. You will find your way eventually.

Do you have a cfs specialist clinic in your area. Mine is in Liverpool. They have support learning sessions. And although they cannot cure you its encouraging to see others feeling the same way, Sometimes worse.

It is supposed to get easier. We shall both have to learn on our journey. Wish you all the best.


Firstly, welcome to this site where you will find friendly people who understand how you feel because we are feeling like you do, or something very similar :).

No, you are not on your own but I can understand how you can feel that way.

You say 'you don't know what to do' but I believe it isn't a question of what you need to do but what they (your friends and family) need to do now. They need to show you more support and understanding - how? I hear you ask :)

Did you have your blood tests done through an Immunologist? He/she might offer to write a letter, on your behalf, explaining your M.E. condition for your family and friends. You can keep the letter at home and show it to people who need help understanding why you feel the way you do. My immunologist kindly wrote one for me, as my family were not being very understanding towards me at the beginning.

Are you a member of either Action for ME and/or The M.E. Association? If not, I would urge you to join. You'll get a lots of useful information, which you can then let your family read - if you and they want to. These associations have local groups and meetings too, if you're interested.

The M.E. Association will also send you a special little blue card to keep in your handbag to say you have M.E., in cases where you might need to explain your condition; I needed to use mine a couple of months ago actually and it was invaluable.

Anyway, I hope this has helped a bit and you find support on this site. Just remember to pace yourself and don't expect too much day-to-day. When you feel your body had had enough then rest.

Stay well and happy New Year :)


Hi. I suggest you go yo the Action for Me website. Here's a link Here there are leaflets you can send for or print out that explain ME for friends and family or employers. If you can get people to discuss this illness they may get a better understanding of it. Those that can't be bothered you avoid and those that care enough to try and understand are worth knowing.

Self acceptance is hard in the early days and if you can get some support from an ME clinic I'm sure that would be helpful. But AfME offer support by phone and through the online friends forum.

Good luck x


I have had this for 15 years the best thing I ever had was a male torestarone

In plant done in Harley Street x

1 like

This is a common problem for M.E sufferers as it is generally not well understood and doctors and the media perpetuate the myth that M.E is a non-illness or a psychological disorder. Most people with M.E seem to be conscientious and hard-working and so we tend to put on a brave front and carry on far longer than we should. You have my sympathy.



You may also like...