I’m sure I am not alone in that most of my friends do not live in the same city as me. I have 2 friends within a 5-mile radius of my house but most of my friends live at least 2 hours drive away. This means that, due to my health and their busy lives, we rarely meet up and rely on social media and emails to keep in touch. A friend of mine has recently moved into the area after 6 years away. Being an Army wife has meant lots of time outside of the UK. We have been able to meet up regularly and catch up properly over the last couple of weeks. The thing that struck me was that I had M.E 6 years ago, and yet it wasn’t something that my friend was overly aware of. I downplayed my symptoms and hid away when I was feeling unwell. It got me wondering about how and why my openness about the illness has grown and evolved while she has been away.
6 years ago, I kept my illness private. I only told close friends, family and work colleagues(who had to know). This secrecy was mainly due to lack of understanding and my lack of energy to explain how the illness made me feel. If I had to cancel a social engagement, I wouldn’t give the real reason, I would say I’d had a hard week, some kind of family issue was going on, or that I had a bug. As I explained to my friend this week, she only saw me when I was feeling well enough to socialise. She has never seen me when I am laying in my bed unable to move my arms and legs or when my speech/brain are functioning so slowly I don’t make sense. That doesn’t mean I think she would run away and be unsympathetic, it means that when my symptoms are really bad I just want to be left alone because I don’t have the energy to communicate with another human being. As I have said in previous blogs, I don’t even see my parents when I am experiencing bad payback. I cope better when I don’t have to please anyone else.
Since starting Foggy 3 years ago, I talk about M.E at every available opportunity. I no longer feel the stigma to the same degree. I won’t lie, I still experience a huge lack of understanding, ignorance, and nastiness, but I now understand the illness a lot more than I did before. I feel reassured that there is a whole community of people with M.E that are going through the same stuff as me, though in varying degrees.
This month marks my 11 year anniversary of having M.E (diagnosis came 4 years later). In terms of symptoms, I am no better off than I was on day one. My symptoms have changed but thankfully the severity has not. My periods of ‘remission’ are now much fewer and far between but I’m sure that is because I am now self-employed and managing ME Foggy Dog; my routine is non-existent (I try hard to stick to one though!). My working life is now very different from working 8.30am-5pm Monday to Friday and doing Foggy work in my spare time. I find it hard to turn off and so pacing and rest are much harder to regulate. I think that by downplaying my illness, the locum who diagnosed me with ‘I think you have Chronic Fatigue Syndrome. You should be grateful, you could have M.E…that’s so much worse’ added to my confusion about my health. OK…let’s move on from that stupid/insensitive/incorrect comment and concentrate on the fact that he played down the severity of the illness. I didn’t Google CFS to find out more info and social media was not as abundant as it is now, I took the GP at face value and thought CFS wasn’t a big deal. I figured that as there wasn’t any treatment I would just have to carry on as I had been, it was either that or drive myself loopy trying to fight against something I didn’t understand. That meant struggling into work, being very confused by the wide range of invisible symptoms, and fighting for people to understand that I was feeling very unwell. I did not know that there were 17 million other people in exactly the same predicament. That GP’s attitude impacted my own perception of my illness for years. I now see that he was unhelpful and insensitive, and there were so many ways that he could have helped. He didn’t even tell me that there were charities for CFS/ME patients or point me in their direction for support. I only came across the ME Association when I planned to set up Foggy. I had to type into Google ‘ME charities’. The ME Association was at the top of the list. I didn’t know that CFS was M.E, and I also didn’t have a clue what M.E stood for (Myalgic Encephalomyelitis) or how to pronounce it! I have learned so much stuff since Foggy was ‘born’ back in 2014 and now I am very happy to be passing info, however basic, on to new sufferers, undiagnosed people, and the general public. Just because we have the illness, doesn’t mean we fully understand what is going on!
We are frequently told not to self-diagnose using Google, but I think the ME community would be lost without Dr Google. I have learned so much more about my health using the internet than I have ever learned from human doctors. Now, as an M.E advocate, I meet new patients, or as yet un-diagnosed people EVERY WEEK. They are all experiencing what I did at the beginning. That needs to change. So many people are struggling without knowing that there is support available and that there are people fighting for their illness to be recognised and for research to be funded.
Sorry if this blog doesn’t make loads of sense, I have brain fog today!
and Foggy (OBVIOUSLY)