Is anyone else feeling dismissed by the doctors like they are not been taken seriously?

At my recent rheumatology appointment this doctor as well as my GP both said they think it's M.E. But neither will give a firm diagnosis, and I've to wait until November to be seen again. Possibly for nerve tests.The pain is just getting worse and worse. I feel if they acted more swiftly I wouldn't be, as much on the decline. My friend's & family are getting irritated with me missing everything. They don't understand and feel I don't want to be around them. I feel my mood is making me act out of character I'm usually so easy going & happy go lucky family are saying I've become a bit of a nippy sweety lol

Just so fed up and low tried to get a doctors appointment today but just got fobbed off yet again!

Not working is so frustrating. I feel I wouldn't be at my best, as last year my quality of work suffered. I got so mixed up all the time with the brain fog. Its saddening to not be able to do what you love.

Sorry for the big rant x much love to all Shaunna x ..especially to anyone who actually read all that drivel ha

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6 Replies

  • So sorry to hear this. I can understand how upsetting and frustrating it must be for you. It is very difficult to get a diagnosis for sure. It just depends on where you live, who you see and how your symptoms are viewed, doesn't it? That is why it is essential to have Specialists around the country who actually recognise and understand the condition. There is a lot of pressure going on around Britain to make an improvement to the services for people who need a diagnosis and to support people once they are diagnosed. Some people are 'lucky' and are diagnosed quite quickly but others have to wait for a long time and have many tests, or even look up their own symptoms and suggest the diagnosis themselves, which is not a suitable thing to have to do, is it? Then many people say that, even if they are quickly diagnosed, they ask what they can do and are told to just see their GP for medication and there is no follow-up. Or maybe worse, they are put onto Graded Exercise and work hard at that until their condition gets even worse. CBT can help one to come to terms with a long term condition but it doesn't cure it, no more than it could cure a cold! So a diagnosis doesn't make a big difference, or help one to improve. But, at least you can 'try' to explain to family and friends a little more easily when you have a name for your illness. The problem usually seems to be that people can accept an illness that gets better in a week of two but when it goes on and on and on, other people cannot comprehend it and think that it is time for you to be better and get into the swing of things, not indulge your illness and use it as an excuse to get out of seeing people and doing things. But you are not alone. Remember that. Those who have the same condition know how hard they try to find an answer to this condition. Never force yourself to do things just to please other people. Listen to your own body and let it rest when it needs to rest. Go to bed early and rest even if you cannot sleep. Don't push yourself to do things until you collapse with exhaustion and pain. It is like telling someone with a broken leg to stand up and walk and it will help them to get well. Everyone would say that that is crazy but it is just what is expected of people who have M.E. Get other people to do things for you and do less and rest more. People can't understand unless they have experienced this kind of thing themselves, however much they make suggestions to you about how you ought to live your life. If it happened to them they would want you to be very sympathetic to them but this is an illness that one would never wish on another person, is it?

  • Very good points you have made thanks for your reply.

    I'm less moblie than I was yesterday and can't get a doctors appointnent. Won't be seen again by the rheumatologist until november. Just doesn't seem right to me.

    Definitely isn't something I'd wish on anyone. You're right they can't possibly understand, until they experience it themselves. Said it myself before had a bit of a wobbly yesterday everything seemed to get to me. Went to my friends last night (probably why I'm sore today) She had her cousins funeral though so I knew I couldn't leave her on her own. It was good to, come away from my problems and focus on someone else's life. Think I'm going to make a conscious effort to gradually do more. Keep me sane lol I rested today for the plan to see another one of my pals tomorrow night so hoping that happens!



  • Sorry to hear that it's tough. I have heard going private is worth it. I would if you can afford it. At the moment they are helping to manage some symptoms. Feel a bother anytime I have to go back though.

  • Is there a chronic fatigue clinic you can be referred to? I was referred to one on the nhs which helped me with pacing but they can't offer very much more in any case.

  • I don't think there is or at least I haven't found one. Got a firm diagnosis of M.E from the rheumatologist he discharged me I feel he should have offered me more support. Ah well hopefully get my neurology appointment soon.

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