Acceptance as the foundation for management and recovery of ME/CFS

I believe that the single most crucial step to being able to manage this condition and hopefully make a complete recovery is acceptance. Once we accept that life is going to be different for a while we can focus on how to make the most of that difference. With acceptance we can learn how to get along with the limited physical and mental resources that we have in the here and now. Acceptance leads to a better understanding of the true nature of the illness. And when you understand something’s true nature you can choose the appropriate tools to tackle it.
It took me about 6 month to accept that I had a chronic condition the first time I had this illness, and it was a definite turning point for both my physical and mental health. In those first 6 months I was determined to fight the illness, determined that each day I would be able to do more than the previous day, but I just got worse and worse. Emotionally I couldn’t help but focus on how dull my life was, on all that I couldn’t do and all that I had lost, not to mention the frustration and helplessness of not being able to do anything to make it better. Once I accepted that I had a chronic illness I realised that I couldn’t put my life on hold until I was better. I had to grieve, I felt sad about all the things I could no longer aspire to do, I had to let them go. But by doing so I was able to refocus my resources on how to make life better in the here and now.
Grieving  for the life we used to live and the dreams that we have to give up (at least for the time being) often follow similar stages to those of the loss of a loved one: Denial ‘I’m strong, if I fight hard enough I’ll be better in no time’; Anger ‘why don’t the doctors do anything to find out what’s really wrong with me?’; Hopelessness ‘how can life ever be worth living if I can’t go dancing/play football/hike up mountains’ etc. To reach an acceptance of our illness it’s important to let these feelings flow and to understand that they are all part of the process.
Acceptance vs. Resignation.
Acceptance is a practical acknowledgement of the way things are. Part of this reality is that it is possible to get better from this illness. It takes a lot of time and attention to self-care, and not everybody will return to pre-illness activity levels, but you can get better. Acceptance isn’t just about recognising the negatives of the situation (your new limitations) it’s also about recognising the positives: life can still be good if you approach it in a different way, and maybe one day in the future you’ll get at least some of the things that you miss, back.
Resignation is not so helpful; it is an acceptance of the negatives (your new limitations) but without the acceptance of your power to make positive adjustments. Resignation means giving in to the condition and losing your hope. It is important to try to accept this illness without resigning yourself to it!
So I’ve convinced you of the importance of accepting you have a chronic illness but it’s just not that easy is it? How do we learn to accept such a big change in our life?
We need to allow ourselves to be how we are in the here and now. We can’t change what has happened up until this point, so we can’t change the way things are now. But we can change how we respond to the way things are now. We can offer ourselves compassionate understanding if we are grieving the loss of our previous life. We can choose to accept that today we have less energy than yesterday and not push ourselves to achieve the same goals. We can acknowledge that life seems boring without the ability to do all the things we used to, so maybe we need to learn new ways of beating the boredom in keeping with our new levels of ability.
Practising acceptance one day at a time, one moment at a time, can help us through the processes we need to go through in order to come to terms with the fact that our life has changed dramatically through illness. But it is also a major step to overcoming this illness in another way. Once we can accept the way this illness affects our ability so unpredictably, on a day to day level and respond to these differing limitations, we can put a stop to the negative spiral of worsening symptoms. Acceptance will lead to better management of the illness, and until the medical profession come up with a cure, good management (self-help) is the best chance we have for recovery.
In my book I am writing about 3 ways of approaching self-help: Avoiding making things worse, healthy living to give your immune system the best chance of fighting this illness, and finding your way to happiness and fulfilment through dealing with the emotional impact of the illness. I will write a little more about this 3 pronged approach next week.
What do you think about the importance of acceptance? Can you share anything about how acceptance has helped you move on and tackle this illness? Are you struggling with acceptance in any way? Let me know and I’ll see if I can help.
 

4 thoughts on “Acceptance as the foundation for management and recovery of ME/CFS”

  1. For me, I’ve accepted my illness. After 25 years of being sick, but going from ten to fifty percent of my former energy, I’m not expecting to get much better. If it comes, great. If not, I’m just going to get the most out of every day.

  2. I just found your blog after living with CFS (now SEID!) for over a year. Just before Christmas I was diagnosed with Celiac Disease as well and started a strict gluten free diet as well as adding gut healing foods. My expectation was that I might start to feel better, but in fact, the opposite has been the case. My symptoms have worsened and the past two months have been the most challenging yet, in terms of my physical health, but especially in terms of my mental health.

    I believe in synchronicity, which is why I’m not surprised to suddenly come across a post about acceptance. It’s something I recently discussed with my holistic psychologist and since I started becoming aware of how I was resisting EVERYTHING, I have actually noticed a remarkable shift in my emotional wellbeing. Prior to learning about and implementing acceptance I was feeling incredibly depressed about the state of my life and one of my most important relationships, the one with my partner, was suffering greatly. I’m sure anyone with SEID can relate to this illness placing immense strain on personal relationships. In my case, his mother is also terminally ill and in palliative care, so he is a caregiver to the two main women in his life, which makes things even more difficult.

    Anyway, I digress, I just wanted to say that I agree with you about the importance of acceptance and, for anyone reading this, that it has the power to change the face of your illness. It is the first step in becoming more open and available to healing because it frees up energy and space in your mind and your being, enabling you to attract what you really need. And here I am, reading this amazing blog, by this gracious woman and discovering new strategies and ways to help myself live a more full life despite my limitations. So it really does work like a gateway to opportunities for growth and healing that perhaps were not apparent before because of a limited perspective.

    So thank you for this post and I have a lot of reading to do!

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