The Washington Post: My hope vs. myalgic encephalomyelitis, a chronic neuroimmuno illness

I just came across an amazingly clever word for this issue: hopium. Seems very relevant to this discussion. Hope is not a plan, but it can make every issue seem to go away by simply burying it under a haze. Seems like this is the new big thing in medicine: let's just give people hope. And you have to ask: but why? How is that a desirable goal for anyone? When it's clear that it's nothing but a lie? Let's just tell the truth, it's actually easier and better.

Of course the other side of the issue is being able to communicate like a human being normally does to another human being, but that's a different issue.

 

It should be remembered that Pilowski's original Abnormal Illness Behaviour concept was, in part, based on the patients' failure to be reassured by the doctor's blandishments. Not sure 1969 could be considered new. It was probably not new even then.

 

I have been thinking about hope and ME in my own life as I look back.

When I finally realised that I was not going to get better anytime soon I began to live in the now, if that is the phrase. I had been putting things off for years with the idea I would do them when I was well but I was actually getting worse.

This attitude meant I began to do things I wanted by adapting to my situation and living life to my reduced maximum.

One of the things that happened was I applied for mobility benefit with the encouragement of a friend with MS (who could walk better than me!) This was before DLA and it was a retired doctor I saw who was very kind. He asked about disability aids and was surprised I did not have any. I had never considered myself as someone who needed aids despite my ill health. The common prejudice of the able mixed with not wanting to claim more disability than I was due in the typical way that ME patients allow themselves to be devalued by the medical profession.

If I have one piece of advice to someone newly diagnosed it is that medical aids can open up life immeasurably as they reduce the struggles which sap our energy. I got all of them too late when I would have benefited from them when I was less ill.

If it takes the loss of hope to get a wheelchair, the wheelchair will do more for you mental health by keeping you part of the world than any amount of positive thinking.