Change on the horizon

As seen in the September issue of M.E. Essential.

I had planned to write this in May but life caught up with me. I caught COVID-19 following a delightful trip to Turkey so this comes late to the party. So late that the person at the centre of this piece is now a backbench MP like Boris Johnson and Matt Hancock.

On World ME Day the former Health Secretary Sajid Javid released a statement. The statement was the first time a Government minister had ever spoken of M.E. in a professional and public capacity. I’d be lying if I said I didn’t have a tear or two when I saw the news headlines that featured M.E. I felt at last heard, for years when I said M.E. When I was diagnosed five years ago, the diagnosis came at a time when people considered the condition, an illness like the common cold which meant family and friends thought I’d make a recovery and return to my old life within weeks or even months. This is not their fault but society’s. How untrue were we? But, in light of what Mr Javid this means a whole lot.

Several weeks after the ground-breaking statement, Sajid described the failings in M.E. at an event in London. His speech was iconic because we felt a sea change was on the horizon. The present moment doesn’t reverse the damage that has been done by the society, health professionals and employers. Since my diagnosis, I have been made to feel that my illness was a weakness and one that should subject me to discrimination and medical gaslighting. Two themes, well abled bodied persons are not subjected to. I was told by an employer to go against medical advice in the pursuit of office presence. I was told by a medical professional to think my way out of nerve damage pain. I still am. I was told to exercise despite being physically unable to walk. Living with a chronic illness that is still subject to so much ignorance is a battle, and one I would not wish upon anyone even my worst enemy. For me, if government interest had happened a decade earlier I wouldn’t feel that living with M.E. was like a dirty little secret when applying for jobs, entering into relationships or even making new friendships.

I recently had an appointment with a new neurologist, one who was a specialist in peripheral neuropathy which in my opinion means nothing. Being a specialist in the NHS becomes a pass for arrogant health professionals to say and do whatever they can because they are seen to be more knowledgeable than their colleague’s next door. My family told me, to keep hopeful because having a specialist is something special – it’s quite sad how people with chronic illness become so pessimistic and anxious about medical appointments. I spent the entire appointment avoiding ‘chronic fatigue syndrome’ being mentioned because I knew when that line was brought up the language and conversation would be severely impacted. I did this because this was what happened last time. I went into an appointment owning my M.E. to be told M.E. didn’t exist and I should just suck it up. Not my words, the words of seasoned health professionals. The neurologist on this occasion was far better than who I’d seen in the past. This unfortunately is the equivalent of having IBS but saying “not as bad as last time because I made it to the clean lavatory in favour of the portacabin.” However, we all know, that basing a review of a health professional comes at the end when they discharge you, not at the first appointment. I do believe when doctors do not know on the top of their heads, they become immediately ignorant of other symptoms. Doctors want to shoehorn patients into categories that make their lives easier; M.E. for example became an illness neurologists could diagnose to provide their patient with a label but no more. I’ve often described health professionals as recruiters, they’ll tell you what you want to hear, giving you the belief that life will improve and they’ll find the cure. Instead, they don’t and you end up worsened mentally than when you started the whole exhausting process. Just like the last recruiter I had, built hopes up for no reason. It’s these experiences I hope will become far and fewer for more people who come through the doors I went through.

We spent two years clapping for an NHS that still are to blame for why thousands have been let down, misguided and treated as though they are mentally unwell. I made an unpopular decision during the pandemic to not clap for the NHS. 80% of the staff do a fantastic job but the 20% are the worst and ones that people with chronic illness are subjected to face. So, that 20% deserve no applause but a lesson in bedside manner, manners and empathy. I know that decades before, MS was described as hysterical paralysis but that’s only changed because language and professionals have learnt more. So, I hope Government interest is one of the stepping stones for us to try and change the way we approach M.E. but also chronic illness. But the NHS are not the only group at fault, a majority of the clinical team have a lot to learn but the same could be said for education. If society had a better understanding to start with, some of the failings might not have happened. Just imagine if the label ‘chronic fatigue syndrome had not been used, to begin with, or if exercise was a curative treatment.

I should have copyrighted this sentence. If we had listened to people with M.E. a decade earlier, the health crisis embodied in Long COVID might not have happened. Sajid’s announcement is one that is just the start, it is not going to change everything in a matter of weeks. We can however be in a position where the future for ME diagnoses are less stigmatised. Just, imagine for a second saying you had M.E. didn’t follow on with “Isn’t that the one when you’re tired all the time?”

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