As I’ve been dipping my toes into the ME/CFS online community I’ve noticed how there seems to be a bit of a division between ‘cure campaigners’ and ‘self-helpers’. I guess the most balanced writers have as foot in each camp, but with limited energy it’s understandable that some of us choose one camp to focus on.
Although I’m very grateful for all the energy being expended by others on campaigning for more biomedical research into this illness (and I try to lend my support when I can), I have chosen to direct most of my energy towards learning how we can help ourselves. What concerns me is that sometimes self-help advice is seen as an enemy of the movement to ensure that the physical nature of ME is recognised and appropriate funds designated to its research. In a recent mail online article by SoniaPoulton the fact that a doctor suggested meditation to a long term ME patient was cited as an example of how the physical nature of the illness is not recognised by the medical profession. I too find it extremely frustrating that ME is not taken seriously by the medical profession but I also find it frustrating that self-help techniques such as meditation are not taken seriously by people who could receive great benefit from them.
For me the enemy here is the dualism of the physical vs. the psychological nature of the illness. It’s little wonder that people with a devastating genuine illness turn their back on potentially helpful interventions when the success of those interventions gets manipulated into evidence that their illness is ‘all in the mind’. I want to convince all ME sufferers that recognition that you have a serious physical illness does not have to exclude you from the benefits of self-help which might include psychological type interventions.
I believe in the multidimensional (holistic) nature of wellbeing. Our physical bodily processes, our thoughts, our feelings and (for some) our spirituality all combine in forming our experience of health. Physically this illness affects our immunity and our production of energy, with knock on effects such as sleep disturbance and food intolerances that throw our health completely out of balance. Self-help produces small adjustments to this balance bringing us closer and closer to better functioning. Good sleep, diet and appropriate movement/exercise can give our immune system a better chance of righting itself. Learning how to manage our lives with the limited energy we have instead of trying to use energy that just isn’t available to us takes further pressure off our overwrought systems. Finding a way to stay happy and motivated despite all we are facing makes sure that as much energy as possible is available for the body to find its own way towards health. This may not be enough; we may still need a cure. But we can live much more fulfilling lives in the meantime. The fact that we can make a difference to our health does not mean that we don’t have a physical illness. Surely its worth doing what we can, whilst we wait for the medical profession to come up with something!
I know for some there is another block to giving self-help a chance. One of the stages of grieving the lives that we have lost is anger. We all go through it. This anger is often amplified by the lack of real help offered by the medical profession. Grief is a process with stages to flow through, but sometime we get stuck in these stages. Anger is a common stage to get stuck in with this illness because it is just so justified! But also the stage that most commonly follows it is hopelessness and many people would prefer to feel angry than hopeless and stop themselves from moving on. However if we allow ourselves to experience all of these natural feelings of grief for the loss of the life we once had, we eventually reach a point of acceptance. Once we have reached a true acceptance of the losses involved in our chronic illness we can then choose to move on and live our lives in a different way. We can then take responsibility for doing the best that we can with the circumstances that present themselves in the here and now. Campaigning for a cure might be part of this but self-help will surely have its place too.
Today is national ME awareness day. I want to raise awareness of the importance of self-help for this illness not just the importance of biomedical research. Yes we need better help from the medical profession, but we can also help ourselves!