There is no escaping the fact that M.E. (Myalgic Encephalomyelitis) is an incredibly complex and confusing disease. There are a plethora of symptoms and the M.E. Monster affects each sufferer differently.

I have always maintained that I don’t expect people to understand the condition that I live with. I mean, how can you begin to understand what it is like not to have the energy to sit up or even go to the bathroom to relieve oneself?

The M.E. Monster is like a torturer who takes away every aspect of my life. My body has a broken energy battery which doesn’t charge up like everyone else’s does. Instead it is temperamental and goes from 40% to 0% in a matter of seconds (rather like my old iPhone). Everything costs me. For so many years at Christmas time I had to choose between opening a present with my loved ones and having the energy to eat my dinner. I couldn’t do both.

But just because you haven’t lived the experience of the disease, doesn’t mean you can’t change a sufferer’s life. M.E. sufferers need to be seen by the rest of the world; our voices desperately need to be heard by a society which has ignored this disease for decades.

 

Here is how you can help:

Believe us and the symptoms we face.

M.E. is really challenging for people to understand because the symptoms are often invisible. People can’t see the level of exhaustion I feel every moment of everyday. They can’t see the intensity of the different pains that I feel 24/7 and they don’t see the crashes that happen most days.

M.E. sufferers have spent decades of being disbelieved by those around them. We are in 2021 now and I can guarantee that every friend I have with M.E. has at some point faced a doctor who has told them that the symptoms they have are ‘all in the mind.’

If people took time to listen to us and find out more about the disease from credible sources, it would make all the difference.

 

Be a good friend to us.

I have always classed myself as being incredibly lucky because I have a strong friend and family network who have supported me through thick and thin. They have been there in the scariest and the happiest times too.

The thing I love best about the friends I have who are non-disabled is the fact that they treat me as a normal girl. My relationship with them has never changed. One of my best friends would visit me every week in hospital and tell me the latest gossip in our friendship group to make me feel involved. He’d happily take the mickey about the cricket posters my parents had put up in my hospital room (my love of cricket had been a dark secret that nobody had known about)!

Whilst I know how privileged I am to have that support; the M.E. Monster still causes me to feel incredibly isolated. I can go weeks without being able to go outside and see other humans, which as people have found out through lockdown, is really tough to deal with.

My day can be made so much better when I get a text from a friend sending their love to me or asking me how I am coping.

 

Make sure everything that you do is accessible and inclusive.

There are many M.E. sufferers who are bedbound and even more that are housebound due to the disease. I spent 12 years being completely bed bound and am now mostly stuck in my house. I found that years went by and I didn’t get to live or experience anything. It was like I had fallen off the face of the earth and the world had kept on spinning.

Disabled people have been fighting for inclusivity for decades and there are simple ways to do this. One of the easiest ways is to add captions to videos that you make and add an image description to your pictures. It saves so much energy if I can just read captions, when I don’t have the energy to watch and listen to a video.

Since the pandemic swept over the world, everything became more accessible and I felt like in some ways I was living far more than I have ever done before, thanks to the internet. I spoke to more people than I had for years… I even went to a virtual awards ceremony!

 

Be ready for a change in plan

Since I have been unwell, my family have never been able to plan anything because my health is so unpredictable.! I have often been rushed into hospital with infections on my birthday and Christmas (I’m pretty sure I’ve spent six Christmases in hospital so far)!

Sometimes it is not even that dramatic; I can just wake up and not have the energy to get out of bed and then have to cancel plans at the last minute. I hate not being able to fully commit to anything, but I am glad that my loved ones completely understand.

 

Treat us as humans

When I was in hospital I began to feel like a bed number rather than a person – a bed number that was a nuisance. A lot of the medics gave up on me because I couldn’t communicate.

But it didn’t change when I came home. At times I felt like I was just a pawn in a big game of chess; I just had a big money sign in front of my head. If I wasn’t improving enough, the social team would start talking about how much money my treatment was costing…and I can tell you that there is nothing more degrading than that.

Yet my family would always tell me my worth. They would stand up and be a voice for me when they knew that I was too vulnerable and unwell to do it myself. As I shared my story online, more people joined my plight and through the years they have become allies, which was the very thing that the M.E. community need the most.