Normalising disability

[sammason]

If you use a wheelchair or any other equipment for your disability, how do you feel if somebody says you're 'normalising your disability'? If that person calls it an 'achievement' to leave the equipment behind? If that person writes to your doctor with per judgement about you? If that person is a professional employed by the main support

Comments

[cariadwen]

I read about this and wanted to comment, but as phe was very upset, I don't think anything I could have said would have helped.

The trouble is ME was considered until only recently as a mental health issue and not a *real* illness.

Medical science has completely over turned that.

Unfortunately the medical staff who have been trained to see ME as a mental health issue are still employed in that area. They may have been trained 20 years ago but because they have experience in that area, they are considered experts. Even now! And they continue to be employed there, even though their training is not *helpful* to their patients.

I have a friend who is in mental health, phe still insists that ME is a psychological issue, although thankfully phe isn't employed in that area.

However this friend has had experience in physical medicine before they went into mental health and have reported to me, at being shocked when a man was (to their) eyes, was dying, but the doctor thought the patient was just playing up to get attention. Phe tried to get the patient medical help but was over ruled by the doctor and the patient died.

You can see why I didn't make this comment on the original blog.

[sabethea]

To be strictly accurate, even 20 years ago some (sensible) doctors considered ME a physical illness. (Having been ill for 22 years, I'm in a position to know! Thankfully, my GP at the time was one of them, otherwise I might have had a much worse experience.)

[meepettemu]

I dont have ME. Ive never had it.

But i do have a friend who was diagnosed with it and cured with the 'lightning cure' (process?). Ive never really questioned ME either way, although the 'cure' mentioned seems... dodgy... to me. But *she* felt her ME was mental rather than physical. Is there a school of thought that suggests that there might be two different things going on?

I wonder how related it is to other 'unexplained' things- my partner has ibs-like symptoms that dont react to any particular food and the drs keep pushing either CBT or psych drugs. I dont believe her symptoms are entirely psychological, although i do believe there's a psychological component to them - stress undoubtedly makes her worse (just as stress often makes my health issues worse), but it's similarly inexplicable (and now an actual psych diagnosis for that very reason!)

[kath_ballantyne]

it probably wasn't ME then. Lightning Process is snake oil. It's expensive and has no proper trials conducted.

Has your partner looked in to Autonomic dysfunction/Dysautomnia? I don't know what their other issues are but it's probably worth looking.
Stress does have a big effect on IBS but it's not always the only thing.

[meepettemu]

That was my response to the lighning process too tbh. didnt say that to my friend; It was before i knew her and i was just glad that she had found *something* that had worked for her.

Thank you- i hadnt found that before. I had got as far as *some kind* of auto-immune disorder - she also has raynauds, has (probably - not diagnosed - her doctor decided that because she coukdnt bend her thumb back to the OUTSIDE of her wrist that she didnt have it) hypermobilty syndrome and suffers a lot of pain especially back pain, but everyone just writes her off. It is pointless us going through the nhs because she gets fobbed off, and if we're going to go private it helps to have an idea of where to start! :)

[kath_ballantyne]

If her joints and skin are stretchy then her blood vessels probably are too. Mine are and I pass out if I stand still for too long. Blood pools in my legs. My heart rate goes up to try and stop it happening.
I also have raynaud's and problems controlling my temperature and basically anything your body does without your input mine doesn't work properly.

[lakmiseiru]

I'm not in the UK, but I've heard Dr. Rodney Grahame is in private there and does diagnosis/treatment of JHS/Ehlers-Danlos? There's tons of useful info and resources here: http://hypermobility.org/ (it's a UK charity so they have a lot of knowledge about the system there, and forums too, plus clinic recommendations and the like)

If she's bendy, it's quite possible she's got dysautonomia too (I have EDS and POTS, which is a type of dysautonomia). IBS is a really common comorbidity with both. In my case I look to have both IBS and gastroparesis, also not uncommon in us.

Hope the info helps! And I can't do the wrist trick (and in fact can't do several of the Beighton Score maneuvers - I score 4/9 - it's my other joints that are hypermobile and it does change with age), but that's not the only diagnostic criterion!

[sammason]

I didn't know the word 'dysautonomia' so I goofled it. It's a very broad word, meaning many different things.

One of those words that makes me glad not to be a medical doctor! Also glad to have a very skilled doctor who diagnosed me and continues to treat me. I have one of the conditions listed in the Wikipedia entry.

What I'm saying is, this bendy lady needs a doctor. Not just amateur diagnoses online.