Two years ago (2014) Action for ME commissioned a survey to see how the illness impacted people living with ME (Myalgic encephalomyelitis). There were many startling statistics from the 2,000 respondents. Among them was the fact that 92% had stopped or reduced social contact due to their illness. So, this year I want to share something about the social difficulties of living with ME. My health is now improving and is therefore easier to share than those who are still stuck in isolation. I want to share my experience with those in mind.
Many people with ME can pinpoint a trigger for their illness. Typically this will be a physical trauma or virus. The usual rules of illness etiquette apply in that ‘get well soon’ messages are received and there is mutual anticipation that you will soon be back to your usual self. However, when the recovery is replaced with a perpetual impasse or gradual deterioration, normal convention rules become blurred.
There is no diagnostic test for ME and diagnosis only comes with symptoms persisting for over four months and after elimination of other conditions . It can be a frightening time not knowing why your body has chosen to cascade into a downward spiral and not knowing where it will stop. Having someone who believes and can make sense of what you’re going through is foundational to accepting the illness and moving forward. It sounds such a basic ask, yet it is still sadly a rarity. Despite the many advances of biomedical science, some in society (including Doctors) still believe ME is a psychological condition and that it is ‘all in the mind’. (There is another full blog post about trying to get appropriate treatment that helps and not harms which I’m not going to go into here.) People are typically having to adjust to losing their jobs, loved ones, social life, independence and the person they once were. It is completely unacceptable that they are isolated further due to ignorance and misconceptions from people that should be offering them care and support.Their ignorance can be hurtful and isolating
When my ME was at its very worst it would be categorised at the upper end of moderate. (see NICE guidelines on severity definitions) There were very few days where I could make it out of the house and when I did, I would suffer the consequences of Post Exertional Malaise (i.e it would make my symptoms worse).The fluctuating nature of ME makes it difficult for the sufferer, family and friends/colleagues to accept how disabling it can be. Some days I could leave the house and some days I couldn’t leave the sofa.
The physical limitations on the body understandably bring isolation but the social consequences can be easily overlooked. I am a people person. I am sociable and happiest in the company of others. Unfortunately my body doesn’t always concur. Friends would offer to take me out for coffee, but trying to follow conversations against a background chatter and the blur of coffee machines was cognitively excruciating, ultimately exhausting and would always make me worse on the following days. Friends visiting me at home were instructed to keep visits to under an hour. Telephone conversations were particularly strenuous and exhausting and something I avoided as much as possible. Emails were a cognitive challenge and drain on energy and even the television was too much on some days. This wasn’t depression. I was totally frustrated with the situation and I can see how depression can become a secondary problem, especially when this continues for years or even decades without improvement. It takes good friends to stand by you when social interaction is so limited and unpredictable. Some can mistake it for lack of interest or commitment, especially when you can look so ‘well’.
At this point I want to thank my family and friends that stuck by me. Some friends understood my Post Exertional Malaise yet showed no compassion malaise. They continued to bring meals, flowers and cards throughout my ups and downs. (I have goose bumps recounting how touched I was). These grand gestures weren’t necessary but were enormously appreciated. However, the simplest, small gestures like texts messages were also much appreciated.
I’m finding it hard to convey how vulnerable I felt during my worst phase of my illness. I have a strong security in my own identity, a fantastic family and wonderful friends, yet the sense of slipping out of society and being forgotten was tangible. The smallest things that acknowledged that I still existed and mattered in this world were a real boost; a quick text simply saying ‘thinking of you’ would make my day. Twitter became my social life! Not only did I learn a lot of invaluable information from others, but there was genuine friendship from people who truly understood. Conversations were short but sincere and it didn’t even matter if it took days to reply! It seems strange now, but even someone ‘favouriting’ a tweet would somehow help me feel connected to the rest of the world.
Having people value you for who you are and not what you can do is a humbling experience. When people don’t understand the illness, yet still stand by the new, less spontaneous me who is less able to commit and say yes, demonstrates that they believe and value me. I was blessed with many of these friends. Conversely, the opposite was also true. The handful of people that only made contact when they wanted something doing showed either total disbelief or disregard in what I was going through. Having to continuously repeat why I had to turn things down and could no longer commit to, was a painful reminder of what I had become and only added to a sense of isolation and frustration.
I think people that know me may be shocked reading this. It’s not something that is easily shared and discussed. The truth is, I struggled to cling on to the outside world and not get left behind. Even with improving health, this continues to be a challenge.
I do hope that it’s given you some insight into why those stats of isolation were probably so high. If you’re reading this as an ME sufferer I would love to hear how isolation affected you.If you’re reading it because you know someone who has ME then I hope you are encouraged that the small things really can make a huge difference. Why not give them a quick text whilst you make yourself a cup of tea and recover from reading this long blog?!
Further help and information on ME can be found at:
On 25th May I’ll be heading down to London as part of a co-ordinated international protest. As someone who has lost my career and my passion for participating in sport due to ME, I’ll be protesting myself. My health is improving but there are literally millions more who are missing from society worldwide. This chronic illness has been ignored and trivialised for too long and people are living with chronic pain and isolation for years and decades. I’m really excited to be able to be one in a million and bring this to the attention of the Department of Health on behalf of those who would also love to be there. For those who are unable to make the journey there is also a virtual protest and you can send your shoes to make your stand! We will not be overlooked and forgotten! See if your country is participating. Further details can be found here: