United Kingdom

Can You See M.E. Now?

October 20, 2020

Spoken version - https://www.youtube.com/watch?v=ULT8kwdKAo4

In 2014, my world went into lockdown. A lockdown, in some ways, similar to the one many of you have experienced over the past few months. However, also a lockdown which was very different. When I fell ill with a virus 6 years ago, at the age of 9, I never recovered. Since then I’ve lived with debilitating fatigue, excruciating headaches, crippling nausea, noise sensitivity and sleep disruption. I, like millions across the world, caught a virus and developed a condition called Myalgic Encephalomyelitis (ME) or, as it’s more commonly known, Chronic Fatigue Syndrome (CFS).

ME is an invisible, chronic illness that affects over 250,000 people in the UK, over 1 million people in the US and around 17 to 24 million people worldwide. A BBC news report stated that as many as 1 in 100 pupils in the UK could have ME and studies have found that ME is the biggest cause of long-term sickness absence from school. The invisible nature of the disease leads to misunderstanding, scepticism, misdiagnosis and ill-judged treatment from health services. I, and many other people with ME, often hear the phrase "but you don’t look ill." Imagine the effect of this statement on someone who is feeling horrendously unwell. The condition is extremely isolating to those who suffer from it and the isolation is made much worse by the crippling symptoms and the knowledge that there is no cure.

I’ve lived in isolation, unable to see friends, go out to a cafe, go shopping, attend a party or even go to school for long periods of time, similar to the isolation that you may have experienced during covid lockdown. However, in my lockdown there was no helpful online schooling provision, instead it was up to me to source the work, chase teachers for input, teach myself and do the best I could, all with a very low energy reserve. In my lockdown, tutoring and revision websites were expensive with no special discounts for those learning from home. There were: no daily ‘Bitesize’ lessons, no BBC 4 educational documentaries, no news articles on how to cope with boredom, loneliness, isolation or working from home, no zoom quizzes or Netflix parties with friends and family. In my lockdown the world was closed off and inaccessible. And, most importantly, there was no understanding from the outside world of what it was like to live this way. Suddenly, as everyone experienced the boredom and isolation of staying home, just for the few short months of covid lockdown, they could empathise and understand. No longer was I told "you're so lucky that you don't have to go to school" or "I wish I could stay in bed all day." Instead people told me how much they were missing seeing their friends from school, how much they were missing a quality education and how truly bored they were stuck at home!

As the rest of the world locked down, my world opened up. My lessons were put online for me to access as and when I was well enough to attempt them; friends started to text and chat online; I took part in zoom quizzes and online games; celebrated friends birthdays, and for once felt I was included on an even level. As amazing as these changes were, it created mixed emotions. Joy. Happiness. But also a sense of frustration. Why did it take a global pandemic for the world to become accessible to those with chronic illnesses? Why did it take a global pandemic for a school provision to be set up online and for friends and family to reach out and break the isolation? Why did it take a global pandemic to progress the acceptance and understanding of our unseen chronic illnesses by medical professionals and the general public?

With the emergence of so called "long-covid," a post viral condition that displays some similar symptoms to ME, I hope that medical professional's understanding of ME and other chronic illnesses will increase. When I first visited the doctors to find out what was wrong with me, I was so wracked with nausea that I had to stare at the multi-coloured fish in the GP surgery’s fish tank to stop the nausea from taking over, I was as pale as a ghost and I'd dragged myself out of bed for the first time in weeks. The GP told me that it was "just post-viral and would soon go away." When I visited again, and again, and again to watch those fish, I was told that I was "faking it" to get out of school or I was going through "hormonal changes" or I had “anxiety” or “time will heal” or a "positive mental attitude will pull you through." Two years later I was finally diagnosed with ME and eventually referred to a specialist clinic. This is a story that is far too common in the chronic illness community.

Dear Doctors, with what I expect will be an increase in the amount of ME or similar post viral illnesses, in the aftermath of the vicious Covid virus, I beg that you listen to your patients and diagnose them as quickly as possible. 

The world has learnt many lessons during this difficult time of global pandemic and I hope that the lockdown experience will create a more compassionate and accessible world for those with chronic illnesses. I hope that some of the practices that have emerged will help those who have lived and will continue to live in lockdown every single day.

Teachers: work to provide the best online provision that you can.

Doctors: listen to your patients.

Friends and family: reach out to those living in isolation. Your text message or short phone call could brighten up someone's day.

This trying time has highlighted how much more inclusive the world can be. Make the new normal more understanding and compassionate than the old one. Let those with invisible illnesses not feel quite so invisible again.

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  • Yellow Sweater

    Your courage and eloquence to write a piece of my own about my experience. For some reason I have a very difficult time describing my sickness, so I looked at it through the lense of a song called Nobody's Empire.

    Here is the link https://writetheworld.com/groups/1/shared/211291/version/437496

    If you want to check it out. Thank you again for your amazing speech. It really touched me.

    4 months ago
  • Yellow Sweater

    I have ME as well. This was so cathartic to read. Thank you! Thank you! Thank you! Do you listen to Belle and Sebastian. The lead singer Stuart Murdoch has ME and weaves it into his wonderful songs.

    4 months ago
  • Writing4Life

    Lol I saw your interview, and I just gotta say, you've got a really cool name ;P

    5 months ago
  • Rachaelgrace

    This is so good. Thank you for writing it.

    6 months ago
  • A. Penderwick

    This is incredible. It's very well written, and your 'performance' of it is equally amazing. You did such a great job of including facts, and personal stories, which made it much more powerful. I've never heard of ME, but it sounds truly awful. I also found it interesting how you compared your own isolation to what others are experiencing due to Covid-19.
    Congratulations on the win! You definitely deserve it.

    6 months ago
  • Writing4Life

    Wow, this is awesome. I get what you're saying, I've had bad health issues for over 5 years, and it has been a never-ending cycle of doctor visits, diagnosis, treatment, and disappointment. I remember feeling sick so many times, I stopped believing myself. My illness, (that still isn't resolved) has stopped me from enjoying so many things, it has caused me to gain a lot of weight, also stopping me from doing things I love, and completely turned my life upside down. But I know, we'll all get through this <3

    6 months ago
  • Anne Blackwood

    Oh my gosh. Thank you so much for this!! I'm so glad you were a winner. I'm not going to pretend what I've gone through is quite as horrible as yours, but I too have invisible chronic illnesses that took too long to diagnose (over a year). Thank you so much for raising awareness about us, and congratulations on your win.

    6 months ago
  • SunV

    This is really nice! I watched the spoken word earlier, and that was amazing too! Congratulations on the win!

    6 months ago