M.E. and my identity

I'm Katie, I’m 18 and living with Very Severe ME. I live my life in one room, always in my bed.
Not leaving it for months at a time. Everything, literally everything, happens from here. 

As you can partly imagine it affects all aspects of life. Although I’m not sure you can know just how much.

I first got properly ill at 13 and from there have lost more and more of my life and being. My friends. My education. Hobbies. Sports. Joy and happiness. My identity. And the experiences you could expect a teenager to have. Parts of my family have drifted as they have been forced apart by lengthy hospital stays and the requirements of my care. Family who live further afield and can’t visit nor can we. And guests in the house are far too much for me to cope with. It isolates not just me but my whole family.

There is not an inch of my life or how I live that ME has not affected. 

The more I lost the ability to go to school the more I lost my friends. But that was on them and their choices to start with. Teenagers argue and fall out anyway. And then when we’re ill we’ve pretty much all experienced accusations of faking. It’s a hard combination. I’ve wondered why I either wasn’t good enough, what my illness changed for them, or how they didn’t know me well enough to know I was always wanting to do everything I could. The same when it comes from relatives or beliefs it’s in our heads, exaggerated or made up. All those ridiculous things we are told.

It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot.

Aside from that even those I’m still friends with and would love to talk to or see I’m unable to due to my health. It has gradually trapped me and hidden me away more and more until it’s like I have ceased to exist in the outside world. Neighbours never see me leave the house, because I don’t other than in an ambulance, school people haven’t seen me there in years. My school years have passed now with no qualifications. I’m housebound but can’t even interact with my whole household. No family dinners, movie nights or outings.

My identity was my passion for drama, education, and having fun with friends. My love of riding horses, hockey, the sunshine and outside. Enjoying shopping, dressing up and doing my hair and makeup. Spending time with family, young cousins and family friend’s children. Always being busy and having something to do. I miss it all hugely and have gone through so much grief as a result.

But I have gradually gained a new identity, new friends, and new joy. My life is so unbelievably different but despite the horrific symptoms it’s not all awful, there are small pieces to find in the mess of it all. And perhaps my identity now is more meaningful. 

My identity is my writing and voice about this illness and experiences. It is the strength it has taken to get through these years and be here. It is the power when I stand up to health professionals and fight for what I need. The ability to advocate and metaphorically stand strong. But it is also my strength in my weakness. The tears I’ve shed and the support I’ve needed. Learning to be vulnerable and rely on others, be a team.

And when I say everything happens from bed that includes some nice things. Crafting and starting my own little small business, yes, I need a carer to help but it’s something I never did before. And creating my platform and sharing my story.

My friends are powerful sufferers of this illness who are better than the ones I’ve lost. I’ve known true support and care. I am in awe of them and their strength. Reminded every day why I write and why I share on social media. I’ve created stronger bonds with some family due to the level of care and interaction. 

ME and all it comes with has ingrained itself into my life in a way that will last long after this illness does. 

Some may take this to say my illness is my identity. Or the idea that we want to stay ill for some unknown secondary gains. It’s not. It’s just affected everything including my identity. Perhaps it’s not even the illness but just me. I’ve changed my identity as I’ve adapted to my situation.

My life has drastically changed because of ME. But I’m Katie, currently 18 and suffering, and I believe I will get to live again one day.

M.E. Awareness Day poem 2023

Myalgic Encephalomyelitis, the name they give,
An illness so misunderstood, its hard to live

It turns out invisible,
Means dismissible

The cause unknown,
We are left alone

Symptoms unseen,
My life robbed of all that could’ve been

M.E. the illness i cannot prove,
My limbs are weak, I cannot move

The waves drag me under,
The symptoms hit like thunder

Then the concrete feeling sets in,
My world turns dim

My body broken, my sprit drained
A life half lived, forever restrained

Pain and exhaustion beyond compare,
A struggle to breathe, a gasping for air

I lay in bed for days and weeks,
Not able to find the energy my body seeks,

Weighed down, my head throbs and my eyes burn,
My body aches, my muscles quake, but met with unconcern

In silence and stillness I exist,
Living in a body that always resists

Now trapped inside the four walls of this room,
I have little life, my body consumed.

Days blur into weeks, weeks into years,
A life thats been stolen, a future full of fears.

This is the life of M.E.
A chronic illness thats hard to see

Waiting for someone to lift this heavy veil,
To set me free from my body’s jail

For now I lay here day after day,
Hoping for change, in some way

But funding is missing,
It seems no one is listening.

We fight to get our voices heard,
Not listened to, but not deterred.

You never see,
You ignore M.E.

An audio recording of this poem read by me and photos of M.E. sufferers