I have been suffering with a chronic neuro immune disease for over twelve years called M.E. It stands for Myalgic Encephalomyelitis and remains very misunderstood in all aspects. You may have heard of it called by a multitude of different names including Chronic Fatigue Syndrome and sadly still, Yuppie Flu.

Jessica Taylor-Bearman

Jessica Taylor-Bearman

  1. There are so many things we do not know about M.E. but most importantly one thing we do know is that contrary to popular believe, M.E. is not 'all in the mind'. It’s a physical condition that affects sufferers to different degrees. There is such a vast spectrum. For example, when I first got M.E. I lost everything and I couldn’t go to school. Instead all I could do was lie in a darkened room. Other sufferers, despite symptoms, can still just about go to work for a short amount of time even if they become more ill afterwards.
  2. It is not a rare condition. In fact, 250,000 people in the U.K are suffering from it in some form, and 25 percent of these are severely affected. I have over sixty symptoms that stop me from being able to live an active life. They fluctuate throughout the day, leaving life to often be crippling. In my day, I can lose my speech and movement from doing anything that involves exerting myself for a small amount of time.
  3. I live in constant pain and just to get out of my bedroom, I suffer greatly with extreme fatigue. It’s as if you’ve been hit by a double decker bus full of exhaustion, head on. It hurts to move. I still like to try and do something, but every time I crash afterwards. This means my symptoms increase, my energy decreases, and I’m left unable to move from my bed. Light and noise is excruciating so often I will spend the time with ear plugs and dark glasses on, just fighting to keep going.
  4. It’s really hard being this sick for so many years without receiving any medication that will fix the problem. There is no cure for people with M.E. Some people can improve over time, whilst others get worse too. Firstly, I nosedived down the staircase of health and didn’t really start to get any better for years. I remained a mute, trapped inside a broken body that could not move. It was difficult to even think, let alone keep up hope that you will get better when there are so many factors in your way. Thankfully, I did start to improve but it took a lot of time and I am still severely affected.
  5. I lost all my independence when I was 15 years old. This included being able to touch my face and brush my teeth. I completely rely on other people to be able to live.
  6. I spend most of my time living in a world of one room. Although I can now just about get out of my room via an electric wheelchair, I still spend over 95 percent of the time stuck in my bedroom. I like to think of it as a world rather than a prison. I use social media to deal with the isolation.
  7. M.E. puts a huge strain on any family setup because everyone's life has to revolve around the disease. It has brought my family closer together but it could have gone either way with the stress of having to deal with someone so severely ill.
  8. I divide my day up into family time, rest time, and helping run my charity (Share a Star) from my bed. If I don’t balance things, then I end up unable to do anything productive. I use what little energy I have to help others because I know what it is like to have nothing.
  9. When you are chronically unwell, you really start to have to appreciate the little things in life and find joy in the smallest acts. I paint through laughter, although I feel really exhausted and in pain afterwards, I love to create.
  10. I’m bedridden activist, which means I do most of my advocacy from my bed. It makes a difference to know you’ve helped someone or by writing a book like A Girl Behind Dark Glasses, I can change someone’s perspective on M.E. We all need to live in hope, that’s really important.