Equivox guest blog: My life with M.E./C.F.S.

Photo of author and Equivox logo

by Katie, Equivox participant

 

Hello, my name is Katie, I am 21 years old, and for 4 years I have been living with a condition called Myalgia Encephalomyelitis or Chronic Fatigue Syndrome (M.E./C.F.S.). M.E./C.F.S. is an invisible illness, and its symptoms include, but are not limited to, fatigue, muscle and joint pain, and issues with concentration and focus. Symptoms vary from person to person, so this illness can present itself in many different ways. There is no single way to be ill from M.E./C.F.S.  More importantly, however, there is no treatment for this condition, and so we battle our symptoms everyday with little support.

Unfortunately, M.E./C.F.S. is a very poorly understood condition, but many people develop it after an infection. It can take a long time to obtain a diagnosis, and even once we are diagnosed, many doctors do not understand it, and there is very little treatment and support. It is estimated that 17 million people in the world have M.E./C.F.S. and there are around 250,000 sufferers in the UK alone. This number is increasing every day, because it can be caused by Covid 19 infection.  Yet there is no cure at all, because the precise cause of the illness is not yet understood.

Some people are fortunate enough to be offered occupational therapy and a form of mental health counselling as treatment. However, these are heavily oversubscribed and is not suitable for everyone. I myself was offered occupational therapy but found that shortly after stopping treatment, my symptoms began to get worse. I did learn some very valuable skills there, but it is not for everyone, and some therapists are definitely more effective than others. Besides, these treatments can only help reduce some symptoms: as mentioned, there is no cure.

A few years into being sick, I decided to try medication. More specifically I tried a few different types of antidepressants. Some of them definitely offered help or at least some relief, but they came with their own challenges. For instance, many of them worsened my brain fog and fatigue, and I even had an allergic reaction to one of them. I am now not taking any medication, and just take some vitamins and supplements to help, but this is an expensive luxury that not everyone can afford.

I wish people knew that my pain and fatigue won’t just disappear: M.E./C.F.S. is a chronic illness, I am likely stuck with it forever (unless more money is given to funding research into its cause and therefore developing a cure). I remember being told when I first got sick that I would be fine within a year. But my illness isn’t going anywhere and I’m learning new ways to adapt my life every single day. I still have plans to become a modern languages secondary school teacher and make a difference in the lives of young people. This might look different to a “normal” teacher without my health problems, but I’m going to try and make it work for me. Some people with ME/CFS are unable to work at all, so I’m very fortunate that currently this is still a possibility for me. Every person with a medical condition has a life beyond our illness – we have likes, dislikes, passions and dreams. Mine just happen to languages and teaching.

We are more than just a list of symptoms. I am more than pain, fatigue and flu symptoms – I am Katie.

 

 Equivox is an awareness-raising campaign, sharing the lived experience of disabled people. You can find out more about the campaign here. If you would like to participate in Equivox, click here. You can find us on Instagram @equivox_campaign 

 

 

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