When I first read the Spoons description of being ill, I thought That’s it exactly, surely every healthy person will understand now! But I still read people dismissing it as whinging and not getting what is being described. And of course, it didn’t explain how to deal with that situation of limited energy. So this blog takes a few tentative steps to solving those two problems.
The Crux of the Problem
When somebody you know is ill or struggling, it’s easy to think ‘toughen up’, ‘make an effort’, ‘you’re giving up before you even try’. You may actually be sort of, sometimes right, but you also may not be right at all. By simply looking at someone, you can’t know how hard they are trying and what they’re capable of.
Just to complicate things further, if you are the chronically ill person, you probably also don’t know what you are capable of, because it changes day by day.
When I first got sick I didn’t believe it. Having a brain injury, I was living in a half-haze most of the time anyway, so I just slid my attention away from the reality of illness. This meant I could avoid completely giving up hope, but it also meant that I kept doing ridiculous things. For example I’d go out to meet friends in town and get so exhausted that I couldn’t find my way home again. I couldn’t remember the route, couldn’t read train timetables, couldn’t understand bus routes.
Pushing myself in this way was harmful, but after a lifetime of living at normal speed I didn’t appreciate that I just needed to slow right down and rest. And while there were supportive people in my life telling me to slow down, there were also many people telling me to push myself, stop being lazy. To them I didn’t look ill, because they only saw me when I was well enough to leave the house, and I tried to hide symptoms until I was on my own.
Energy for the Sick and the Healthy
Eventually, I worked out it was like this. There are different types of energy:
- Easy, healthy energy
- Energy that you have to push for
- Harmful, desperate energy
- Easy healthy energy
This is the energy that you use up freely with no ill effects.
When you are healthy, you mostly operate with this kind of energy – you use it to go to work, hang out with people you like and look after your basic needs. It sometimes feels to a healthy person that these things are hard work, but once you push yourself to doing something, you don’t suffer any bad effects afterwards, and probably feel better for having achieved something.
In chronically sick people, this energy can be brief or non-existent. It might be used up getting out of bed and getting dressed. And that’s it.
- Energy you have to push for.
This is the energy that gets used when you make an effort, but has few ill effects. It’s a good energy to use, the one that enables you to do new things, take on new challenges.
For a healthy person it can take determination to go to a party where you don’t know anyone, or to go for a run early in the morning on a cold day, or to mow the lawn. A few side effects might be aches and pains or some awkwardness. Once it’s over, you feel fine, perhaps better for having accomplished something.
In a sick person, this energy is also brief, you might use it to read the paper or make yourself dinner, and then it’s finished.
- Harmful desperate energy
Using this energy causes physical damage that lasts for days/weeks. You should only really use this in exceptional circumstances.
Healthy people will rarely ever use it. If you talk to someone who has run a marathon, this is the energy they use. It involves pushing yourself beyond the exhaustion barrier, time and again. Afterwards, you are not just tired, you are destroyed, and your body is suffering for some time as it recovers.
A chronically sick person uses this energy a lot, it may be all they have. Because they are only doing simple tasks that should be easy, they don’t think at the time they are using harmful desperate energy, and often there won’t be the immediate physical symptoms that a person gets while running a marathon. It may only be when the activity is over and their body is in pain, leaden with exhaustion and they can’t think, that they realise they have overdone it.
Using the Right Energy
It took a long time to work this out, but slowly, and with many mistakes, I stopped using the harmful energy. I put restrictions on myself, on seeing people, on how many things I could do in a day. I started using mostly the healthy energy, occasionally the push energy. It was the right thing to do, because it gave my body the rest it needed to heal. And I was lucky enough that it did heal.
But then, over the next few years, that belief that I shouldn’t do things became my disability. I wasn’t lazy, I hadn’t given up, I was just trying desperately to look after myself, to treat my body with kindness. Out of fear, I stopped using the push energy at all and my health stopped improving.
Once I realised that, I began to head in the opposite direction once again, to push myself, to take risks, to take on tasks I felt I was incapable of. Because by this point I had much better health, it was possible to actually achieve some of those things without ever using the harmful energy. And in doing those things, I gained in strength, optimism and my health improved.
So to sum up
- When you are very ill you need to learn how to slow down and stop forcing yourself to carry out activity way beyond your abilities.
- As your health improves you need to start gently pushing yourself and finding out what your boundaries are.
- There is no clear way of knowing when that change occurs, and it is not smooth or a clear point. Nobody else can tell you when that point is, but you will also struggle to recognise it.
How to Figure Out What You’re Capable of:
For a sick person:
Experiment – the only method that worked for me was to experiment gently, slowly increasing activity and doing so without stress or pressure – avoiding stress is especially important with BI, frustrating though it is, you need to be gentle with yourself.
Mistakes are ok – accept that you will sometimes get it wrong, and that’s ok.
Vary activity – for times when you aren’t feeling motivated or inspired, have a list of hobbies ready (see previous post on this: https://inkbiotic.com/2016/04/15/brain-injury-refinding-purpose/)
Listen to your body – one of the most useful strategies was learning to recognise the messages my body was giving me. Mindfulness and meditation help with this a lot. Time spent just paying attention to pain and anxiety will help you learn to listen to your body and brain.
Other people – listen to what people you trust are saying, ignore completely what other people are saying (they may well mean well, so no need to be nasty about it, just smile and ignore them).
For a healthy person:
Looking back to my life before I got the BI, it fills me with shock how much I didn’t do because I thought I couldn’t. I put up imaginary boundaries all the time: not taking jobs I thought were beyond me, giving up on learning new skills because I seemed so crap at them, being creative to the point where I got praise and then trying no harder.
When I was trying to recover, everything was so insanely difficult that I discovered just how much effort is possible. Not that I was a lazy or undetermined person before, but compared to the effort of learning to read again (for example) it was nothing. No effort at all.
Talent and intelligence are useful, but they are nothing compared with effort. Speaking as someone who has less intelligence now; I am way more able, have achieved things I never thought were impossible before the accident, just because I try so much harder.
I suppose what I’m trying to say, is when you get the urge to say to a sick person ‘try harder’, say it to yourself instead, because you are the one that definitely needs to hear it and they probably aren’t.
TL;DR If you aren’t the one with illness, you don’t have a clue what the sick person is capable of. If you are the one with the illness, you have only slightly more of clue.