This pandemic – and particularly the various lockdowns – has suddenly given the world a very slight dip into the ocean of what it is like to live with M.E.. I have lived this kind of an existence for over a decade (well fifteen years if you must know).
Although my life has changed immeasurably from the years when I was completely hospitalised, it is still a very secluded one. I am used to spending my days stuck inside, I am used to not being able to go to the shops when I want to, I’m used to being controlled by something much more powerful than myself: the M.E. Monster.
When I was first admitted into hospital, the psychiatrist (whom I nicknamed Psychowoman) desperately tried to diagnose me with a psychiatric condition. She wanted me to be treated in a locked ward in London because she couldn’t understand that my condition was physical. She said the pain I was in was due to “Some sort of childhood trauma” and of course it must have something to do with the fact that I didn’t have my own bedroom at home… Yep, it was that ridiculous.
Despite managing to prove to Psychowoman that I wasn’t mentally unwell, the haunts of being disbelieved still follow me today.
I moved to another hospital, which was honestly horrendous. I remember listening to when Boss Man came to do his routine ward rounds on a Friday… He would go to each patient in the bay and judge whether their improvements were enough. He was terrifying.
When I’d been there a few weeks, he went to the bed of a lovely girl who was a few years older than me. He shouted at the top of his voice “you do not have CFS, you have an eating disorder”. My eyes widened as I listened to the girl sobbing. Not one nurse or doctor comforted her…they all left as soon as Boss Man pulled open the curtain to her cubicle. It was utterly humiliating.
I would love to say that was a one off…that it didn’t happen again… But if I said that I would be lying. In fact it happened regularly. It was my turn a few months later, Boss Man asked my parents to come in for a meeting…a meeting that I was not allowed to attend…
In this meeting, which ended with my dad being shouted at by Boss Man, he told my parents that I was suffering with ‘Persistent Refusal Syndrome’…(which doesn’t exist). He claimed it was a serious condition, but the only information my dad could find was for a psychiatric condition called ‘Pervasive Refusal Syndrome’, which I have STILL been unable to shake off my medical notes. PRS starts with kids refusing to go to school, (which in my opinion is a bloody outrage, because I loved school), but I had no voice… I could not be heard.
When it was time for me to leave that hospital, which shock horror coincided with the moment I spoke out about the abuse I had been suffering, they wanted to send me to a priory that specialised in eating disorders…despite the fact I didn’t have one.
I remember him telling another patient “You do not have M.E., you have depression!”
It made me think then… Can you not be feeling low AND have a physical condition? It seemed to be a very outdated, black and white approach. What if the physical condition caused you to feel low?
Now the whole country has spent the past year in and out of lockdown and suddenly (but rightly) everyone is talking about the importance of mental health. I mean it seems perfectly reasonable that having your freedom taken away from you would make you feel low…it’s logical isn’t it?
The media are talking about the mental health crisis, which the country will be facing due to the pandemic. So why can a person not feel low when M.E. has taken their whole livelihood away, without being told that their whole condition is ‘all in their mind’?
I must put the disclaimer that I’m not trying to suggest that mental illnesses are not real in any shape or form, I’m trying to ask why it has to be that you are either physically ill OR mentally ill?
I also think of Boss Man – and there are many many other versions of Boss Man dotted around the world – he stood at the end of my bed and tried to tell me that what I was feeling wasn’t real. He dismissed my friend of being depressed rather than seeing that actually her mood was affected by her situation. He said that I had some bizarre condition because it was easier for him to say that I was mentally ill than address the fact that he hadn’t managed to make me better. The fault had to be on the patient.
So I’m glad that the world has suddenly got this eye opener into my kind of life (even though my life is even more restricted than lockdown is for many)… I want to be able to say that I’m struggling to a doctor without feeling terrified that they are going to disbelieve me or try to change my diagnosis. I want the world to understand that nobody would choose to have this kind of life. I want the world to think how terrible it is and for all the scientists to think that they’d better work on a cure to stop this kind of suffering…
I know it’s a lot of ‘wants’, but maybe the biggest thing I want is understanding and empathy and a lot of Kindness.
I don’t think that is too much to ask.
I got incredibly lucky. I had severe depression and anxiety when I caught the swine flu which then developed into ME. I was the one who initially put the ME symptoms down to depression, which meant I didn’t go to the doctor for months, but my GP realised it was something new and separate and so was able to diagnose me correctly despite also having significant psychiatric issues. I’m no longer depressed (more luck) despite now being almost completely bedbound for years. From the outside the symptoms can look similar, but it feels very different, the biggest probably being exercise/activity improving depression symptoms (or at least not making them worse) whereas too much of either causing crashes, payback and/or relapse in ME. Also when depressed I had no motivation to do things, whereas now I do, but don’t have the energy and crash if I try. I really feel for those who have both, especially those who don’t have the support I do (my amazing wife and awesome friends).
If my GP hadn’t listened to me then I’d probably have kept trying to push through the symptoms, wouldn’t have recovered from depression, and there’s a pretty good chance I’d no longer be alive. It shouldn’t be down to luck. I’m not mentally healthy, still being extremely anxious, but it’s easier to deal with both my physical and mental illnesses if they’re taken seriously and I’m treated like a person. Being yelled at and blamed never helps.