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How not to behave in Church...

September 12, 2011

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Communicating about disability - when there is no shared reference point.

Often I blog about self management with the aim of maybe helping someone experiencing something similar. But today I'm writing mainly to non-disabled. To the people trying their best to understand our reality. One of the challenging things about communicating with loved ones about hidden disabilities or symptoms is that most will have no concept of what we are trying to say. No shared reference point on which to build understanding. And so the natural thing to do is build their understanding on a different reference point and...we get confusion and misunderstanding. Like me trying to say I can be so fatigued that my legs can't hold me up (wheels only on those days!), and them saying 'I know what you mean, I feel like staying on the sofa after a long day'. 2 completely different things. Like...so different I don't even know where to start explaining it. Severe fatigue doesn't mean 'feeling like you don't want to do things' - it means being unable to.

Hypermobility type Ehlers Danlos Syndrome: Progressive or not?

I've noticed this discussion recently on social media. The problem is that there is a difference between 'a progressive condition' and 'a condition which can cause progressive levels of disability'. With the former, deterioration is inevitable. It will happen in every case. In the latter, it will happen in some cases. With hypermobility type Ehlers Danlos Syndromes (which many experts consider as the same as JHS and BJHS), the genetic fault that has caused the faulty collagen remains constant. It doesn't change. It doesn't progress in a medical sense of the word. But the symptoms can get worse. The level of disability can progress. Mine got worse. Lots worse. I deteriorated from a 20 year old with a few quirks and vulnerabilities, to a 28 year old wheelchair user, retired on permanent ill health grounds, with unstable joints throughout her body and who struggled to hold a conversation or eat. With the benefit of hindsight and everything I have lear

But "You don't Really need a wheelchair, do you?"

Many wheelchair users use a wheelchair sometimes - and walk other times. This can be hard for people to get their head around - and it's not unusual for even people who see this kind of use to say things like "but you don't really * need * a wheelchair do you". So I thought I'd share a few relevant moments from my day yesterday. My usual wheelchair usage pattern is wheels when out and about (with brief moments of walking if safe), but feet as much as possible in the house, because walking where practical/possible helps with my long term condition management. Yesterday my symptom levels were moderate-to-high (an improvement on the previous day's high symptom levels that necessitated doing little beyond lying still and listening to audiobooks.) So, I'd been resting in bed and decided I needed the loo - part of me thought using a wheelchair would be wise, but I decided no - it's less than 5metres from my bed to the toilet, with 2 doorframes between to hol

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How not to behave in Church...

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