Detaching from the identity of chronic illness

Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin.

I attended a yoga workshop today, where the underlying theme was opening the heart and letting go of that which no longer serves you. It ticked all the right boxes of where I am in my life at the moment, and I left feeling lighter, calmer and at peace with the world. In case you didn’t know: I love yoga.

As I was lying there in meditation, we were invited to let go of the things in our life that we no longer need to hold on to, and I realised that for me, that thing is illness. For those of you reading this post who also experience chronic illness, I suspect this will make a lot of sense, but for those of you who are generally fit and healthy, it may sound pretty bizarre. But chronic illness is so much more than just being chronically ill.  When you experience the same pattern of symptoms repeatedly over many months, years, or even decades, those symptoms become the very essence of your existence. Long-term illness creeps its way into every single aspect of your life: work, home, relationships, hobbies, diet, bedtime routine, the list goes on and on. Every decision you make, and I mean every decision, has chronic illness behind it. It’s like a constant parrot on your shoulder that you can never get rid of. Chronic illness becomes a part of your identity. Sometimes, when times are really bad, it is hard to know where the illness stops and where you begin. And not only that, but all of the thoughts, beliefs and emotions that come along with those symptoms, become part of your identity too.

Up until very recently, these were some of the thoughts I experienced on an almost daily basis:

  • Oh no, these symptoms again, I can’t cope with this
  • How much longer is this going to go on for?
  • Will I ever get better?
  • I’m going to have to cancel my plans again, what if “insert friend’s name here” gets pissed off?
  • YAY, I feel good today. Oh wait, how long is it going to last?
  • Maybe if I just meditated more/took this supplement/lived off of ice cubes, I might get better

Etc, etc, etc.

In addition to my US treatment for Lyme disease, I recently added a “brain retraining” programme for CFS/ME into my recovery. Sounds a bit nuts, and I don’t want to go into details of this just yet, as it’s early days and I’m still working out what I think about it all. But without question, it is helping. The focus of this programme is to calm the nervous system, in two main ways: 1) directly through meditation, deep breathing and stress management, and 2) by reducing attention (read: obsession) on symptoms, illness, and all the kinds of thoughts listed above. Amongst other things, it involves redirecting focus away from negative thoughts, beliefs and images, to more positive, empowering ones.

For the first couple of weeks, it was hard-going. The negative thoughts were pretty much constant. Any time I stood up, sat down, got in the car, noticed a symptom, noticed a lack of symptom…basically any time I so much as took a breath, a thought or image related to chronic illness would crop up. It was really quite eye-opening to start paying attention to these thoughts, not running from them or trying to push them away, but just noticing they were there, accepting their presence, and then calmly redirecting my attention. It made me realise just how much illness has become ingrained in my entire existence; my self-identity. And the trouble with this, is that it is a self-perpetuating cycle. How can you get better when you are constantly telling yourself, without even realising, that you and this illness are one?

But after those difficult first couple of weeks, changes started to happen. The thoughts were cropping up a little less, and my brain was automatically picking the positive images over the negative ones. Don’t get me wrong, the thoughts are still there. They’ve been there for about ten years so I guess they’re not going to go away overnight. But when I wake up in the morning, my first thought is no longer “am I feeling sick today?”. When I make plans for next week, I’m no longer assuming that there’s a good chance I won’t be well enough. Of course, I know that realistically, there is still a good chance I won’t be well enough, but I am no longer stressing, obsessing and expecting the worst. I imagine health. I picture energy. I believe, deep down in my soul, that I am on the road to recovery. And that may happen next month, it may happen in a year – it doesn’t really matter. I am no longer attached to a timeline, a “deadline” of how much longer I can cope with this for.

For the first time in my entire life I have stopped the frantic search for an answer from the outside world, and instead, I am looking within. And slowly, but surely, I am detaching from my identity as a sick person.

2 thoughts on “Detaching from the identity of chronic illness

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