I began this process in an attempt to try and understand how I have and will adapt to having ME/CFS. But somehow along the way, I feel that I may have lost myself as well. Part of the catalyst of this realisation is that arrangements have started for a school reunion next year. And whilst I am very much looking forward to seeing old friends and catching up with those I have lost touch with, one part of it is terrifying me.
We, in western culture, are defined by what we do, some may say by what we have but I don’t want to entertain that rather distasteful perspective. So that leaves me with the question – who am I? Although I am technically still employed I don’t actually do any work just now. I don’t have a job title or a position to fill. I used to be active and had a number of hobbies but I can’t do any of them now. Does this mean I am just a person with an illness, with a disability? Is that all I amount to? I hope not but I am struggling to find evidence to the contrary, at least in the same context that others judge achievement, success, and identity.
Inevitably the questions will come up; what do you do for a living? What interests do you have? What hobbies do you enjoy? What have you done since you were at school? Pretty much the answer to the above questions is “nothing”. So what do I do? What do we, people with ME/CFS, have to do to show the world that we amount to more than just being the host of a debilitating illness? That our experiences, even though they are within four walls, or in a bed, are no less valuable than those who are fortunate enough to have careers, hobbies and are living life to the fullest.
I have spoken before about how I wish I had a sign or a t-shirt that read “I have ME/CFS, don’t judge my achievements by your standards!” but unfortunately I don’t. And the situation is not helped by ME/CFS being an invisible illness to the vast majority of society. ME/CFS will take your hopes, aspirations, achievements, freedom, joy, pleasure, friendships, relationships, clarity of thought and credibility. In return, you get pain, exhaustion, loneliness, worthlessness, isolation, disbelief, confusion and loss.
But all is not lost. I am determined for that to be the case. I refuse to accept that this illness, this disability devalues me as a person. Although I can’t contribute much I feel that I now have a far better understanding of what people with chronic illness and disability have to go through on a daily basis. Almost all of which is not seen or ignored by so many. I am grateful to now be part of the ME/CFS community. This is a thriving virtual world where those with ME/CFS and their families and carers, who prior to social media and increased connectivity they would have been isolated, can meet, discuss, rage, complain, laugh, cry, celebrate and support each other.
Having ME/CFS leaves you in a dark place in a darker, frightening world. The only remedy to darkness is light, and light, in this case, comes from knowledge, awareness, and empathy. If you have ME/CFS, if you know me, if you read this blog or if you know someone with ME/CFS, talk about it. Learn about it and share your knowledge and your experiences with it and the people who have it. Only then will those of us who have it and those who care for us will feel recognised and included.
I would love to have a conversation where if someone asks what I do I can say, without fear of shame or judgement, that I have ME/CFS. To which their reply would be “oh that’s that seriously debilitating, life-changing, critically underfunded, poorly treated illness. I’ve heard about that, you are doing well to meet me, I appreciate it.” Rather than the usual, “what’s that then?”