Dealing with Being Unable to Control or Predict ME/CFS, Fibromyalgia and other Chronic Illnesses

The human spirit is amazing, when confronted with an illness that we are told has no cure, the majority of us still find ourselves compelled to find a way of making things better. We may campaign for more research, we may turn to complementary and alternative medicine or we may focus on learning what we can do to minimise our symptoms and make life better. We’ve all tried something! And there’s often just enough of a benefit for us to keep trying.

For me, I learned enough about self-help that eventually the gradual improvements added up to recovery. Even now that I’m ill again, I know that my self-help keeps the symptoms to a minimum. This gives me a sense of being in control, I feel good about myself for doing what I can to maximise the quality of my life. Unfortunately though I’m never in quite as much control as I’d like to think I am. Every now and then the illness sticks it tongue out at me and reminds me that it is not controllable or predictable.

We often have flares, crashes and downward slides. Occasionally we can recognise a trigger for these things: overdoing it, a fresh infection, hormonal changes, a stressful event? But a lot of the time there is just no predicting or explaining why we’re having a bad day today. We’re desperate to understand because we want to prevent it from happening again, but sometimes we just have to accept it as part of the nature of having an illness that’s not yet sufficiently understood. There’s nothing we can do about it but live with it the best that we can.

The worst thing is how it confounds our plans. When there is something that we want to do that we know we can only do on a good day, we might try very hard to ensure that when the day comes we will be having a good day. That might mean being very careful for days leading up to the event. Pacing, pre-emptive rest, being really good about avoiding things that we suspect might be involved in making the illness worse, trying not to get too excited. And then the day comes and we’re just not well enough. And it’s so frustrating and disappointing! In fact sometimes I even think that I’ve failed somehow, I can even feel guilty about having to cancel (again!).

These are hard feelings to deal with and we have to deal with them regularly. Unfortunately I can’t offer any advice about how to prevent them. All I manage to do is minimise their impact. I do this by accepting myself for having such feelings. I remind myself that I’m not in total control. If I was I wouldn’t have the illness in the first place. I remind myself that there are a multitude of reasons why anybody might have to cancel an event and a chronic illness flare is just as valid as any one of them. I allow myself to feel the frustration and disappointment; I grieve the loss of the event. But I don’t allow my thoughts to dwell on how unfair it is, how I miss my old life or whether I’ll ever be free to do things like that again, without the risk of cancelling. Once I’ve connected with my feelings and let them out, I focus my mind on comfort. What can I do to make myself more comfortable in this moment?

It’s not pleasant, and it’s not pain free, but that’s life! We all have to deal with frustration, disappointment and loss at times in our life. Unfortunately we tend to have to deal with it more often than most, but that means we get to have a lot of practise at minimising its impact! If you’d like to find out more about minimising its impact, read my post on befriending unpleasant feelings.

2 thoughts on “Dealing with Being Unable to Control or Predict ME/CFS, Fibromyalgia and other Chronic Illnesses”

  1. Hi
    Moderately affectiond, working part time in a very supported jo, but with a lot of pain, using a mobility scooter for all but short walks
    It’s the ‘connecting with my feelings and letting them out’ bit i struggle with. I have always had problems ‘feeling’ but now it seams i need to!
    Any ideas to help with a’feeling, feelings’

    • Hi Poppy,

      Thanks for commenting. A difficulty with connecting with feelings and letting them out is often the result an having some belief system that judges the expression of feelings negatively in some way. These can be deeply programmed and not always very conscious and can take a bit of work to overcome, even when you know that you want to. The first stage is to identify what are the rules that you might have internalized about expressing unpleasant feelings. Are there any should’s or shouldn’ts or any messages that say expressing such feelings make you unworthy, or ugly in some way? The next stage is to choose what you would prefer to believe and the final stage is to reprogram your response. One of the best way to reprogram such limiting beliefs is to visualise the kind of pain you will experience in your life if you keep them, and how much better life could be if you let them go and chose another repsonse. However sometimes it can be helpful to work on then with someone, especially if you need help to feel that you are still worthy and acceptable even when you express difficult emotions.

      I hope this is helpful, please don’t hesitate to ask if you have any questions!


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