Because ME/CFS is still not fully understood, and research is underfunded we really need all the campaigning that we can get. This campaigning needs to show the worst face of the ME/CFS picture because it is the people who suffer the most that are most desperately in need of medical advances and better understanding.
Unfortunately though, this kind of campaigning can be very frightening for anyone suffering from the illness. This has a kind of negative ripple effect because any kind of worry adds pressure to an already over-stimulated sympathetic nervous system, making the illness more difficult to control, increasing your chances of becoming one of those scary statistics.
For those of us that aren’t severely ill, there are actually many things that we can do to stay as healthy as possible and keep us away from becoming one of those statistics. It is really important to remember that! If we have enough energy to invest in self-care we have enormous potential to influence a more positive future.
Because most research is directed towards understanding the cause and finding a cure for ME/CFS, the kind of helpful illness management advice that could have a positive impact on statics just hasn’t reached people on a consistent scale. I believe that if every person who was diagnosed with ME/CFS before getting severely ill was taught the kinds of illness management skills that I have learned can be helpful, then a lot of damage could be prevented.
On the grand scale of things this isn’t the perfect answer, because there are still many very poorly people who desperately need help, and even those of us who are not so desperately ill, have the right to want a cure, not just a better quality of life. However, on an individual level it means that you really don’t need to worry. There is enough understood by enough people to help you make sure you do not become one of the scary statistics if you are ready to learn the skills that will help you manage this illness better.
In my own personal experience of this illness, and in my experience as a life coach working specifically with people with this illness, I have learned that the single most important thing we can do for our well-being is to eliminate stress and worry and find a way of living that includes as much relaxation and peace as possible. Whilst this might not lead to a cure, it can lead to us avoiding the scary complications that are quite rightly quoted on our behalf by campaigners for better funding for research.
We need to remember that these campaigns have a particular purpose, they need to get people to wake up to the threat of this illness. However, if we allow them to worry us as individuals, that worry will contribute to our ill health. As individuals, we need to focus on what is going to best serve our well-being. Worrying is not going to serve our wellbeing. Instead, we need to choose to believe that we can take measures that will have a positive impact on our future and then we need to take those measures.
So next time you come across a scary statistic about ME/CFS, remember why it’s being shared and remind yourself that on an individual level, with good illness management, there really is nothing to worry about!
Thank you for this post and for all the other ones that I have read but haven’t responded to! Your work is greatly appreciated by me and I am sure countless others who continue to battle with this miserable illness. It is so easy to get despondent and depressed and this post is valuable and reassuring 🙂
My very best to you – Helen