Recovery Vs Management

When talking about long-term conditions/impairments there is a tendency to talk about the individual being on a road to recovery. Where recovery is a mystical place in which the individual will once more be “the person they were before developing a condition/impairment”. Now that’s a huge ask! If you were to ask a non-disabled person to be like the person they were five years ago they’d struggle a lot.

I think we can look at recovery from two different angles,firstly the removal of physical impairment and then there is a mental recovery, the idea that one will forget the rubbish they’ve been through with their health and go back to being a “normal” non-disabled person. At this point though I think we have to drop the pretence that recovery is ever going to get you back to how you used to be. It is more that recovery is the road to becoming non-disabled. Something that’s not possible for many of us, and for those in doubt I’m going to look at the idea of recovery from a physical and mental standpoint now.

The recovery model works for some folk with acute injuries that can quickly heal, but for many of us that’s not the case. As far as we know right now these conditions will be with us for life. Pain will always be a feature, as will fatigue, mental discomfort, and things doing what they shouldn’t do instead of what they should. In these cases recovery is not currently possible, and asking one to recover fully is foolhardy. Sure, a cure may arise next year, but until then what do you do? Even when you’ve taken the cure there will still be other things to deal with, like strengthening muscles, rebuilding damaged relationships, learning how to walk and so on. Becoming non-disabled is still going to be a long hard road and until you reach your goal you are still one of us, and you still need to find ways to cope.

Mentally we all change and adapt as time passes, and those that live with long-term conditions/impairments are going to be changed by that experience. Be it having missed work, lost friends, gained new friends, discovered the government and the NHS aren’t perfect when it comes to looking after disabled people and so on. Our experiences change us, hopefully for the better. It’s painful to admit, but chances are that if you’ve been living as a disabled person in this country for over 6 months (less if you’ve needed to access social security) then you have seen behind the curtain and you can’t unsee the rubbish stuff you’ve seen. It’s part of your experience of life, and that might not be what you want but it’s there all the same. You will never be the person you were before. The good news is that you get to be the excellent person you are now! The person who has learned how to adapt and survive, how to manage difficult emotions and how to start living a new version of your life after being hit with a massive plot twist.

Now I’m starting to move away from recovery, and towards coping with having a condition/impairment. Or, as it’s called, condition management.

The management of a condition basically describes finding strategies to deal with both everyday and long-term challenges thrown up by it. Rather than waiting for it to get better (which in many long term cases it won’t), we can employ our knowledge of ourselves, the condition/impairment, others in our lives, and the world around us to work out ways of still getting some things done.

Traditional methods of managing long-term conditions/impairments include;

Pacing – working out just how much you can manage to do before you become too tired, sore, dizzy, or otherwise symptomatic and you need to finish. This won’t always be the same, so it’s vitally important to learn to listen to your body so you can pace accordingly. What you can manage on a great day when the sun is shining and your pain is low will differ significantly from a bad day when you can’t sit up in bed without tears. Many find it helpful to imagine they have a finite amount of energy each day (varying upon feeling good or bad) that they have to stretch out over the day. Below is one analogy that might help explain things

batteryanalogy

Battery Model of pacing, taken from theunchargeables.com

  • Planning – this is taking what you’ve learned from pacing and using it to plan ahead realistically. Yes it might feel rubbish to say “I’ll only do one activity a day on holiday” but you’ll soon realise it’s better than doing two on day one then being in bed for days two and three. It also involves planning ways to make tasks easier for yourself. Can’t walk more than 50m without being done for the day? Look into wheelchairs/scooters. Need to take lots of small stops along a route? Look into sticks and frames that have a small seat attached so you can take those stops. Don’t feel safe in new places? Arrange for company, or if that’s not available maybe arrange to have soothing objects with you, like a photo that makes you feel good or some empowering music to buoy you up. It’s not going to make all the troubles go away, but it might help minimise them so you can be more comfortable.
  • Preparing for change – Again, this is an advancement of the previous two, planning and pacing. This one can be harder though, and it involves preparing for unexpected changes. No matter how much you rest and look after yourself before that weekend away, conditions can still flare up. Then not only do you have to deal with feeling rubbish health wise, you also have to deal with the disappointment of missing out on something. You can never totally avoid the disappointment of missing out, but you can look at ways of mitigating it. If you do little things to prepare for the worst, then if it does happen at least you can know that there is still a plan in place. I like to make sure I’ve checked to find out what new shows there are to binge watch in bed should I not be able to go. I make sure I have a book ready, or some ideas for writing. I have a cheer-up playlist that I can put on the moment I realise I’m not going away to help me fight the blues too.
Condition-Management-Framework11

An example of some management techniques suggested for those with diabetes.

While I think that the recovery objective can be helpful for people with shorter term conditions/impairments, I think those of us with life long ones need to initially focus on management. Once we can manage our day-to-day lives, then looking at the long road to recovery, should it even be possible, is something some may wish to do. I think that focusing the other way round, especially if you know that there is nothing more the doctors can do for your condition/impairment, is counter productive and wastes precious time and emotional resources.

I dislike that the recovery model is the one so many medical practitioners and charities use. I personally find it profoundly unhelpful to be told to focus on recovering when my body has recovered from all the damage done. It’s still impaired because it doesn’t function “normally” and never will. To my mind there is no more recovering to do, I just have to learn to live with it like it or not. No matter how unfair or unjust that feels.

I think there comes a point where we all need to accept that we’ve been effected by our experiences, they’ve shaped us, and that we don’t have to let that drag us down. We can use it to strengthen our resolve, our manner of dealing with people, our capacity for empathy, our desire for justice, equality and eventually liberation. We’ve learned that we can survive hardship, we can survive pain and fatigue, we can survive others treating us unfavourably, we can adapt and we can use it to empower us. Focusing on managing your condition isn’t giving up, it’s propelling yourself forwards.

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  1. June 6th, 2017

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