Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Help with approaching Doctor and Benefits advice

Discussion in 'ME/CFS Doctors' started by tangozebra, Nov 1, 2017.

  1. tangozebra


    Hello, I’m looking for some advice.

    Although I believe that I have suffered from ME/CFS for most of my life, I have never officially been diagnosed.

    I’ve had mental health issues since a very young age and it took me til I was 27 before seeking any help with it. But I knew that I had bigger problems.

    I left school in 2003 and ever since I have spent 99% of my life in my bed with severe exhaustion, low cognitive function, coupled with my depression and anxiety disorders and various other conditions such as sciatica, eating disorder, severe migraines from optic nerve damage, and various others.

    I’m looking for advice from fellow sufferers about how to approach my doctor about CFS as to be honest I’m absolutely terrified. I always fear that not only am I a complete waste of life, and a burden on everyone, and a waste of a GP’s time, but also afraid of the potential embarrassment suffered if I just get fobbed off and told there’s nothing wrong with me, like I’ve been told most of my life - by non medical professionals that is.

    I’d also like to know what sort of benefits is best to apply for (in the U.K.) for CFS sufferers. ESA or PIP?

    I’ve been told that I’m unlikely to qualify for PIP basically because I don’t actually need my backside wiped for me.

    I do work one evening a week in a theatre, which is the least stressful job on the planet but only offers 3 hours per week - some weeks of the year, and I’m finding it impossible as a32 year old still living with his aging parents, to survive on £20 a week as I have done for 14 years since leaving school. So I genuinely need some additional financial support. I’m finding even doing such minimal hours more and more exhausting, but in reality I actually find getting out of bed and going for a shower very exhausting.

    Anyway, I’m having one last go at trying to save myself and asking for help.

    Many thanks in advance
  2. hellytheelephant

    hellytheelephant Senior Member

    S W England
    Hi Dave

    Firstly, you are most definately not a waste of space. You have been through a lot and your journey through life is valuable and special- don't ever think you are not deserving of adequate mental and physical healthcare....and kindness.

    The first thing would be to get a diagnosis. I suggest you find the list of the diagnosis criteria and print this out to take to your GP and say that you think you might have ME. Some GPs have little knowledge about ME or are reluctant to give a diagnosis of ME, ( it is possible your GP might put your physical symptoms down to your mental health problems) and if this is the case you could contact your local ME support group and see if someone can recommend a local GP you could sign up with who does know about it. It is possible that you may not have ME...but could still apply for benefits.

    Next step is to contact your local Citizens Advice who can advise you on benefits and should have a case worker who can visit you at home and fill out forms/ deal with the bureaucracy for you. PIP has a big section which is aimed at people who are unable to do specific things due to mental health symptoms: anxiety, social phobia etc. It is not true that you won't qualify just because you can get out of bed and can work 3 hrs a week..If you are living with your parents they are probably doing a lot of tasks for you that you are unable to do. You do need a professional to do the form for you.

    Wishing you luck:)

  3. ivorin

    ivorin Senior Member

    Hang in there @tangozebra God knows it's sometimes hard but help can be found and as more and more is known about the human body all our chances become better. Just start by finding a doctor able to diagnose ME or finding what else you may have. It's a long game and it's played one step at a time. Time to take the first step. Fuck, I'm rooting for you, don't let go before you've given your all :)
    hellytheelephant likes this.

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