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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The hidden challenges of invisible disabilities - BBC Capital

Discussion in 'General ME/CFS News' started by TiredSam, Jun 6, 2017.

  1. TiredSam

    TiredSam The wise nematode hibernates

  2. Starlight

    Starlight Senior Member

    Hope it will really become the norm soon. I'm always glad when I hear or see this kind of reporting.It is still so rare.
    Hutan, TiredSam and Mel9 like this.
  3. Webdog

    Webdog Senior Member

    While I agree with the sentiment, this isn't currently possible for the vast majority with ME/CFS, for the simple fact that ~90% are undiagnosed. You can't tell your employer if you yourself don't know.

    Employers quickly stop tolerating employees who say they are too sick/tired to come in to work, but have no diagnosed medical condition. You can't ask for accommodation because there is nothing diagnosed to accommodate.

    Eventually you either leave the job or risk getting fired.
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

    Maybe one day. Hopefully the increase in flexible working for the normals will allow for more employment for the disabled too.
    lafarfelue likes this.
  5. ash0787

    ash0787 Senior Member

    my mother asked if I want to go on holiday to a caravan park, for a normal person it wouldn't even be a consideration but to me its seeming like a logistical nightmare...

    I will probably go though because she says theres a lake which might have big fish in there, I want to catch a 20lb carp, although I caught a 2lb trout and it was almost strong enough to overpower me ...
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Toronto, Canada
    "Isaacs has HIV-positive friends working in finance who feel unable to share their diagnosis with employers. Despite his own ordeal, Isaacs encourages those with invisible illnesses to disclose their condition early, where possible."

    Wow, that is probably one of the most irresponsible pieces of advice I've heard regarding employment, especially for people living with HIV.

    I've lost track of the number of stories I've heard from people losing their jobs / opportunities / squeezed out not long after disclosing their HIV status to employers. The risk far outweighs potential benefits.
  7. arewenearlythereyet

    arewenearlythereyet Senior Member

    I thought that too. The problem with something like epilepsy or even HIV is that it's been around long enough and is prevalent enough for people to change their opinion ....however those discriminatory behaviours still pervade.

    I'm not sure you can change the hearts and minds of employers as easy just by being open about hidden disabilities. Asking individuals to act as sacrificial lambs to the slaughter is probably a little futile.

    I prefer a more hard stick approach. I think governments should provide free litigation costs for those employees finding themselves discriminated against funded by corporation tax. Unfortunately if you are discriminated at work the cost of taking a company to tribunal is around £20k in solicitors costs and the likely payout is a max of about £30k ....if you the maths doesn't work out and most employers solicitors know it. It also doesn't help having legal insurance since the game there is to take the premiums and deny cover based on the insurers subjective view of whether you will win the case.

    Discrimination is rigged against the employee I'm afraid so I find the advice a little naive.
    slysaint and ScottTriGuy like this.

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