Acceptance of ME/CFS, Grief and Getting Stuck

The word acceptance often prompts very mixed reactions amongst sufferers of ME/CFS. Many people argue that we should fight for better medical treatment and more research, not just accept that we have a long term illness and get on with it. Others confuse acceptance with resignation and see it lying hand in hand with misery and hopelessness. Similarly when I talk about one of the processes by which we reach acceptance – grieving, I am often met by a stiff upper lip reaction of ‘you should never dwell on what you’ve lost but focus on the future instead’. So today I want to clarify why I believe that grieving and acceptance are important for coming to terms with and overcoming ME/CFS. You might also want to read my earlier post on the subject.
A key feature of this illness is that it is easily aggravated and can worsen considerably if not managed carefully. Careful management involves avoiding overdoing it, overstimulation, stress and overexcitement, amongst other things. This is almost impossible to do when you can’t accept that life is going to have to be lived differently for a while. Anger, frustration and denial all result in extra energy demands on our body with negative consequences to our health. And yet they are all natural responses to being confronted with the fact that you have a debilitating long term illness, along with feelings of loss and hopelessness. Whilst it’s certainly not helpful to ‘dwell’ on any of these feelings, many of us do get stuck there at least for a while. I believe that acceptance is reached at the end of a process of grieving. The smoother the flow of the feelings, the sooner you can reach a point where you can let go of the past and focus on making the most of the here and now. Once you reach an acceptance of how your life needs to be led now, you no longer have to waste precious energy on anger, frustration and inappropriate activity spurred on by denial. That energy becomes available for maximising your health and quality of life.
Not everyone shares the same need to grieve in order to reach an acceptance. The more you are able to value the small pleasures and achievements of the here and now, the less important is the past and the fewer the losses. However if you do find yourself stuck with persistent feelings of anger, frustration, denial or hopelessness it may well be to do with the process of grieving being blocked.
In my experience the simple key to unblocking emotional ‘stuckness’ is self-accepting and compassionate acknowledgement of the underlying feelings. No feeling will every go away if it is just bottled up or ignored. It will hang around waiting to pounce or squeeze itself out in a slightly different form, often at the most inappropriate moment. Allowing yourself to be what you feel, when you feel it, without judgement allows the feeling to move and the process to flow to its conclusion. Sometimes blocks can also be about fear or benefit. Some people get stuck at one stage of the grieving process because they fear being at the next stage or because they perceive the benefits of being how they are now, to be much higher than the benefits of moving on. For example we can get stuck in the stage of denial if we are fearful of how life could ever be worth living if we face up to having this illness. Or we can get stuck with feelings of anger if it seems preferable to feeling hopeless. Often we get stuck with feelings of hopelessness because we judge ourselves negatively for feeling that way.  I am not saying that it is good to dwell or wallow in your feelings, in fact dwelling and wallowing are often the result of  similar processes of judging, fear or choosing one way of being because it appears more beneficial than another. But I strongly believe that warm, compassionate acceptance of how you are feeling, allows that feeling to flow and change. It can allow you to move on.
If you feel that you might be stuck, and are finding it hard to allow your feelings of loss to flow through to an acceptance of this illness you might want to explore some of the following questions. Often simply becoming aware of what is getting in your way can be enough to help you move on. Be kind to yourself though, exploring difficult emotions can use up energy, choose a time when you have energy to spare. It will free up some of your energy in the long run though!

  • Are you able to accept and respect yourself even though you are having the feelings that you are having?  If the answer is no and you are judging yourself negatively for having a feeling, it is a sure way to stop it from flowing. What do you think is wrong with being a person who has such feelings? How exactly are you judging yourself? Would you judge someone else in the same way if they were going through the same thing? If you can’t convince yourself that those feelings are an understandable and acceptable response to what you are going through, then maybe you need to share this with someone. Perhaps they can convince you by showing you how much they accept and respect you even with the knowledge that you are feeling those things. Take the risk of talking to someone, be it a friend, family member or a counsellor.
  • Is fear holding you back? Try to ask yourself what exactly you are afraid of? Is what you are afraid of a certain consequence of you moving forward or is it all unknown? What is the worst that could happen? Could you plan for dealing with the worst and yet hope for the best? Can you share these fears with anybody that you can trust?
  • Can you identify any benefit of being stuck in this stage? Does it seem easier to be where you are now than to move on?

There is always help out there if you find this a particularly painful process. Talk it through with someone you trust, or ask your doctor to refer you for counselling, or perhaps there’s a voluntary counselling agency near you? The Samaritans are available 24 hours a day if you find yourself alone during a time of crisis. The emotional freedom technique (EFT)is also a useful tool for many people who find themselves stuck with a particular feeling.

2 thoughts on “Acceptance of ME/CFS, Grief and Getting Stuck”

  1. Wonde4rful article. Captures the essence of how to deal with this condition, as many others. I particularly like the notion of being kind to yourself throughout the process. Too many of us berate ourselves for not being the person we think we were or ought to be. Allowing ourselves the freedom to be just who we are, right now, is liberating and , ultimately, healthy.

    kind regards



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