An MP’s M.E. group in Glasgow got us all talking about depression, anxiety and physical symptoms.
I struggle to see my M.E. as ‘real’, in spite of the symptoms. It was so good to hear others share their experiences at SNP MP Carol Monaghan’s M.E. group in Glasgow.
I went to a Myalgic Encephalomyelitis ( M.E.) group meeting recently. It was run by a lovely SNP MP named Carol Monaghan. Not only is she an MP, but she also has a BSc (Honours) in Laser Physics!
Monaghan is noted for her work in getting M.E recognised in the House of Commons. She invited all M.E. sufferers and their Carers (via social media) to her office in Glasgow to discuss people’s experiences with M.E.
My partner and I arrived half an hour early so we thought it would just be us, the MP and our lattes. However, more people arrived and kept arriving and kept arriving until there were upwards of thirty people in a relatively small office. It was very interesting and a lot of nice people had come along, but I was also mildly terrified. Mostly because in new situations I’m always mildly terrified. But my anxiety was also rearing up because I found it so strange to hear people talking about my illness in such serious terms.
I started this blog because I wanted to be completely honest. I don’t want to offend people. These are my personal thoughts and neuroses, and please don’t think I’m negating anyone else’s life and experience when I say it felt truly strange to have a whole room of people talking about my illness as if it was a real thing. Because, as I have discussed before, I really struggle to accept my illness as ‘real’.
I don’t know if my self-punishing perception is a coping mechanism or a self-esteem thing, but it is what it is. To this day, I see M.E. as a failure on my part. If I just tried harder, pushed myself more, I would somehow be ‘cured’. So, when people came into the M.E. group with wheelchairs and walking sticks – people like me, living their lives with M.E. – it all felt increasingly real.
Whether it was the heat from the crowded room or the discussion, I started feeling sick and faint and had to step outside for fresh air. Being at this group had reminded me why I stopped reading up on my illness or participating on support forums. I felt that all that focus on my M.E. was making me feel worse and I was inclined to wallow in my poor health a bit more. I know, of course, that this isn’t everybody’s experience. Recognition and awareness of M.E. is so important, for so many reasons – and because even some people like myself who have it struggle to accept it as a reality. Countless people are helped by support groups, either digital ones or groups where you engage in the archaic practice of meeting face to face.
Part of me always thinks of a House MD episode where the characters were discussing a patient and how this patient’s chronic lifelong illness might have been a misdiagnosis. And House says: ‘she’s already built her personality around it (the illness)’. This throwaway line filled me with fear, because sometimes I do feel like a walking, talking illness. I test myself, trying to go whole days without mentioning it (nine times out of ten I fail).
Despite my personal struggles with M.E. acceptance, it was nice to talk to people in the group. We ended up talking about our mental health and how that affects our illness. Some people had tried CBT (Cognitive Behavioural Therapy) and found it helped to alleviate symptoms. As one of my new friends pointed out, the very idea that CBT might help to alleviate M.E. symptoms was cause for anxiety. In moment of fear we can find ourselves wondering: Is this all in my head?
When you suffer from an invisible illness, one of the many difficulties involved is that you can get used to feeling defensive. Because people can’t see your illness, they question whether the illness is ‘legit’, or you if you are somehow, for some reason, just exaggerating. Up to a point, I can understand their reaction. Generally, human psychology works so that we all tend to question things we can’t see, and fear things we don’t understand.
But, as someone with M.E., I go through quite a lot of fear. I, and others like me, don’t need the fear and doubt of others to cope with on top of the pressure we’re already putting onto ourselves. I, like many others, am struggling with doubt, and questioning to what extent, if any, I control my illness. Am I making hell out of heaven? Am I able to make heaven out of hell?
In order to live with and work with any illness, you constantly feel the need to have a positive mindset, and I think even in this modern age we still do not fully appreciate the power of the brain. If we take just a couple of examples, it’s currently thought that conditions like IBS and alopecia are aggravated by anxiety, if not caused by it. People accept that when you’re feeling run down, stressed and overworked you are far more likely to develop a cold or bug. You are getting concrete physical symptoms and conditions related to your mental anguish.
So why do we still have so much trouble as a society in viewing mental illness in the same way as physical illness? We collectively need to understand that the two are not only connected, but symbiotic in nature. Depression, anxiety, physical illnesses… they all deserve the same understanding, sympathy and care.
As a new friend from the support group pointed out, “painkillers don’t target the specific part of the body in pain. They target the brain.”
It reminded me of The Baby-Sitters Club movie (where my 90s babies at?): “The brain, the brain, the centre of the chain! The brain, the brain, the centre of the chain!”
I’m still working through all this. I suspect that, for those of us with M.E., that journey never stops. Yes, maybe M.E. is to some extent in my head, in the sense that it may be a physical condition brought on by mental stress to some degree. Maybe that’s how it is for me. And yet, someone else may have M.E. and the cause of their illness may be different.
There’s so much more still to learn about M.E. More research is needed. The one thing I think you can say for sure is that, whatever the root of the illness is – whether it’s mental, physical or both – the physical debilitating nature of M.E. is very real, and everyone you meet who has M.E. is filled with courage and doubt in their journey of coming to terms with their condition. So many of us struggle endlessly with doubt, and we don’t need to be struggling with anyone else’s doubt as well.