Last year I got an invitation to participate in the Chronic Illness Inclusion Project (CIIP). It’s run by an amazing woman called Catherine Hale whom I’ve now got to know well.
The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.
We often use the word spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this concept makes sense to us and it’s easy to explain to others it’s not one that is easily recognised by medical professionals.
The CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.
Whilst I love using the term spoonie and have badges with a spoon on then I can understand why some people think that we need different terminology.
Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted.
We’re not “just tired” as people seem to think, it’s more fundamental than that. It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.
For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I spend two hours having a shower and getting dressed when I’ve got nowhere to go.
That’s my personal choice and one of the things that gets me so mad with social workers and occupational therapists is that their focus is about pushing me to do tasks which make me too exhausted to enjoy the end result.
How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”. That’s no way to live.
We need to explain to medical and other professionals that being energy impaired has a huge impact on every part of life. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition.
Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day.
If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks.
That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them.
We talk about people having a visual or hearing impairment so why not talk about being energy impaired?
I’m going to start using this new term my blog and elsewhere. I hope and believe that it can change the way we are perceived.
If other disability bloggers and activists use the term energy impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.