Invisible Illness Week

invisible illness week

I’m unsure whether this is just a US thing, but it’s been useful so I’m sharing.

10 Things about my Invisible illness:

  1. The invisible illness I have to live with is: M. E.
  2. The biggest adjustment I’ve had to make is: Where to start? Being still and resting, loss of concentration and therefore my reading suffers, being out of control of my body temperature, dealing with low level pain constantly, not working, being unable to walk the hills in Derbyshire, that will do or this will sound like a moan list!
  3. Most people assume: That M.E. is just feeling tired.
  4. People would be surprised to know: That I’m never free of pain in one form or another.
  5. The hardest thing I’ve had to accept is:  Asking for help – whether to slow down, do something for me, just be quiet, or say no!
  6. Want to know a secret? One thing people say that gets under my skin is: “You are looking well”, when I’m really feeling like I’m working hard to be myself, and then I learnt to say “thank you” and move on. The inside does not match the outside!
  7. If I could have one day of feeling normal again I would: Breakfast in Hope, walk up Loose Hill, onto Mam Tor, down into Edale and have a pint in the pub!
  8. A benefit of my illness: Still working on this one!
  9. Really: Well, a raised interest in art.
  10. One thing I would not change: My partner and my friends.
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11 responses to this post.

  1. This was wonderful: “Breakfast in Hope, walk up Loose Hill, onto Mam Tor, down into Edale and have a pint in the pub!” I’ve never been to these places, but, just based on the fabulous names, I want to join you on this outing! I dream about a pint in a pub and a toasty. Mmmm…..

    Reply

  2. Hi – I’m in a group which believes that ‘invisible illness’ activism is very harmful to the cause of getting our illnesses taken more seriously.

    We’ve just published a statement about this here: http://www.hfme.org/invisible.htm which I’d be interested to hear feedback on.

    My additional comment is that it’s true you might not immediately notice we’re ill on a quick, one-off perusal, especially since we are most ‘seen’ on the rare occasions when we are out and about and feeling much better than usual – and those of us who are sickest are never ‘out and about’, so are just about never seen. [But if you could see them in bed, many with masks to block out all light, earphones to block out sound, and wasted muscles, you wouldn’t call that an ‘invisible’ illness.]

    We do look different, on average, from those who are healthy. Even our family members aren’t in any position to truly know we ‘look well’ because they don’t know how we’d look if we hadn’t been ill for the past 8 or however many years. Expectations drop over time, without being noticed. And M.E. also presents with visible symptoms, if you know what you’re looking for. More so than some types of cancer, depending on duration of each illness.

    Take this excerpt from the HFME page on testing for M.E.:

    Physical signs of illness commonly observed in M.E. patients include:

    Nystagmus; nystagmus is jelly-like and variable (15% of M.E. patients will have nystagmus)
    Sluggish visual accommodation
    Unequal pupils and contrary pupil reaction to light
    A labile blood pressure (sometimes as low as 84/48 in an adult at rest)
    Shortness of breath (particularly on exertion)
    Sometimes marked falling pulse pressure in arterial pressures taken first when prone, then sitting, then standing
    Rapid heart rate on minor activity such as standing
    Subnormal temperature
    Patients show significant reduction in all lung function parameters tested
    Liver involvement (an enlarged liver or spleen)
    Abnormal tandem or augmented tandem stance
    Abnormal gait
    Hand tremor
    Incoordination
    Cogwheel movement of the leg on testing
    Muscular twitching or fasciculation
    Hyper-reflexia without clonus
    Facial vasculoid rash
    Vascular demarcation which can cross dermatomes with evidence of Raynaud’s syndrome and / or vasculitis and spontaneous periarticular bleeds in the digits
    Mouth ulcers
    Hair loss
    Destruction of fingerprints is sometimes seen (atrophy of fingerprints is due to perilymphocytic vasculitis and vacuolisation of fibroblasts)
    Ghastly pallor of face with frequent lupus-like submaxillary mask
    Parkinsonian rigidity of facial expression
    Scanning, disjointed speech, or speech reversals
    Nasal passage obstruction and inflamed areas around tonsillar pillars
    Sicca syndrome of conjunctiva and mucous membranes
    Frequent equivocal Babinski/plantar reflex on one side
    Unusual sensitivity of cervical vertebrae area
    Nodular thyroid (Hooper et al. 2001 [Online]) (Hyde, 2003).

    There are so many reasons why claims that M.E. is ‘invisible’ are so damaging and trivialising to what this illness is, and just plain inaccurate.

    http://www.hfme.org/testingforme.htm

    Reply

    • Hi and thanks for the reply.
      Having read the latest comment on the Hummingbird’s foundation I can agree that It is ALWAYS be better find out if someone is ill, is by asking them. This would make for interesting small talk! ( a definite change from: “what do you do?”
      I cannot however agree that any kind of awareness is damaging to the cause.
      I didn’t read about any specific illnesses being listed in the article and it left it blank for people to self identify. I also try not to judge what other readers will think, there are many factors that influence prejudice and information will still be drawn through that set of filters.
      As an M.E. sufferer I do acknowledge that we are not always seen – housebound or bed ridden – But am also sure that no one (or any) set of information can change the understanding of the majority. That is why I believe that ALL forms of campaigning, interventions ETC, yours included, are welcome in my world.
      Amanda

      Reply

      • HI Amanda,

        Thanks so much for facilitating this discussion on your blog. My point – and a major concern of HFME – is that this ‘invisible illness week’ and ‘invisible illness’ consciousness-raising attempts have the effect of reinforcing the trivialisation of M.E. in a way that exacerbates our mistreatment.

        This is because it reinforces the damage done by tying the ‘Chronic Fatigue Syndrome’ disease construct to M.E. ICD-10 G93.3 (the illness that has been recognised by the WHO for decades more than ‘CFS’ has existed). The ‘CFS’ disease construct was written so as the illness would deliberately appear mysterious and intangible – as you know, its US authors specified that the more pathology can be found, the less appropriate the ‘CFS’ diagnosis becomes. Which is in direct contrast to M.E., which has had its WHO recognition for so long precisely because of the wealth of evidence of pathology – and, obviously, it is very testable. So it’s because of this that ‘M.E. is invisible’ is one of the myths that makes our family and friends view us with suspicion as malingerers, and even our doctors often think there’s no point in giving us extensive testing.

        So my point is, *how* could perpetuating the idea that M.E. is ‘invisible’ be helpful? Of course, as I said, one can’t always tell at a glance that one is looking at an MEite, especially since we’re mainly seen when we’re at our wellest, and looking at anyone quickly doesn’t give you a chance to really notice much.

        But isn’t the solution to explain to people that there *are* physical signs, and that MEites are usually only seen when at our healthiest, and that it’s often an adrenaline surge that’s helping us get through this outing and that we’ll pay the consequences later?

        [In terms of your comment that ‘I didn’t read about any specific illnesses being listed in the article and it left it blank for people to self identify’ – that’s true, but reposting such an article on a blog that’s markedly about M.E. in part, without any disclaimer saying that you don’t think M.E. is an ‘invisible illness’, does seem like a endorsement of the ‘M.E. is invisible’ myth.]

        Instead of endorsing the misconception that M.E. is invisible, I would *love* for M.E. advocates instead to spend that time disseminating info that explains that for MEites, activity exacerbates our condition and that while we may be observed undertaking an activity once or for a short time, there will be major consequences to us if we repeat it. And that sensory stimulation makes us sicker.

        I think getting out these small pieces of info – using the time that would otherwise have gone into confusing people with the idea that our illness is invisible – would get to the heart of the problem, which is that people think that either we can do things or we can’t, and simply don’t get the way M.E. works.

        Reply

        • Interesting info! Again I agree that ME is a more “accurate” term for our illness and that more testing should be done by the National Health (in the UK).
          I also agree that labelling visible and invisible illnesses could be damaging, however I do trust the general public to determine for themselves the consequences of ignorance.
          I also have depression (since the age of 8) and ulcerative colitis, both invisible to the general populace, neither of which I am inclined to detail on a daily basis. This being so, I am still happy to raise awareness of disability in any form. I think it challenges prejudices and perceptions in a broader arena.
          I intend to blog about ME, its name and the lack of interest shown by the health establishment.
          Keep up the good fight.
          Amanda

          Reply

  3. 1 through 6 and that’s with RA and I can also relate to this. Hope you have at least a few better days coming your way soon.

    Reply

  4. Posted by dawnhosking on September 10, 2013 at 9:53 am

    I can relate to this – number 6 especially 😉

    Reply

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