Being disabled at Christmas can be lonely

Danielle Howe

CN: Ableism, loneliness

 

It’s Christmas Eve, and I am currently sat on a train on my way home. Everything feels just a little bit raw, like old scars that begin to tingle from time to time. I don’t know when it was that I started to dread Christmas; when this holiday became a painful chore far surpassing just the usual stress of gift giving and pointed questions of ‘love, you look tired, when will you get a boyfriend to take care of you?’, or, ‘so, how is job searching going?’. I suspect it was around the same time that I fell ill, because that was when everything else seemed to change, too.

The festive period can be especially difficult for people with disabilities or chronic illnesses. I can handle social situations — when they are few and far between. I can carefully plan every moment of my week to make sure that I will have enough energy to get a coffee with a friend; but maybe that week I’ll decide that the laundry needs to be done and so forego the coffee, because my body won’t be able to handle both.

 

“We spend our year trying to fit into boxes that weren’t made for us. A neat little box of health and able-bodied-ness. But Christmas really is the worst”

 

The whole year round, there is a carefully constructed facade of wellness, and of being able to navigate a life that seems fine but in reality is a minefield of health bombs waiting to blow. But when December rears its ugly head and the gatherings start and the family returns — that is when I realise that this is not sustainable.

We, disabled people, go through life aware that our bodies are perceived as inconvenient to other people. It’s a bother to give up your seat on the train for us, or be stuck behind us on the pavement when we are walking slowly or using a wheelchair; it’s inconvenient when we have to cancel long-standing social commitments, or miss our coffee-meet three times in a row. It makes you uncomfortable when we speak about our pain.

We spend our year trying to fit into boxes that weren’t made for us. A neat little box of health and able-bodied-ness. But Christmas really is the worst.

 

 

Over Christmas lunch when your uncle asks how you are, how university is going, how your holidays have been, no one really wants to hear, ‘oh, I’m coping, but it’s painful, and long, and the treatment isn’t working, and quite frankly, what my body needs at this very moment is to be in bed, with lots of painkillers, but instead I am here, putting on a smile and pretending that every single atom in my body isn’t screaming at me for pushing myself so hard for a holiday I hate’. They don’t want to hear that you will be bed-bound for the first few weeks of January just to recover, and that it definitely isn’t worth it, and it’s not their fault and it’s not that you don’t want to be with them this holiday, it’s just that this holiday isn’t made for someone like you.

And it’s lonely. It is lonely sat in a room full of people laughing and joking and opening presents and summing up the past year into snippets of small talk, and all you can do is smile and pretend to be listening, because your body is absolutely exhausted and you really aren’t cut out for this. It is lonely seeing your friends and family go out for walks, go to Christmas fairs, Christmas shopping, going out in the snow, and having to forego all of that, aware that so many of the memories they will be making this year won’t include you.

I am still on the train, and my attention is flickering between writing this, the countryside we are passing, and the little boy opposite me whose eyes are gleaming with excitement and whose lips are saying, over and over, Christmas, Christmas, Christmas. I smile back.

I have been ill for eight years. Diagnosed for two. I have spent all my teenage years feeling like I am trying to squeeze myself into a pair of jeans from when I was ten years younger and failing miserably. Those jeans are health and joyousness and success and everything my family wants for me, so badly that they look at me and smile, and tell me the jeans look just fine.

 

“I know that I am a lot. I have always been a lot. But I will not water myself down to make people more comfortable”

 

I have been ill for eight years. Diagnosed for two. And I refuse. I will not suffocate myself with a mask that doesn’t even look like me. I am not the healthy girl I once was, but I am happy, and I am successful, and I am disabled — and none of those things are mutually exclusive.

I know that I am a lot. I have always been a lot. But I will not water myself down to make people more comfortable. I will not invalidate my pain or hide my body because it is more convenient for people to pretend that this isn’t my reality. I do not have to enjoy Christmas, but I also do not have to silently suffer and make myself more palatable with opiates and blatant lies and fake smiles that hide the wince of pain when I move too quickly.

The truth is, this holiday wasn’t made for me. But there’s no reason why I can’t change that, and there’s no reason why you can’t help me.

 

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Header image by Ian Edward Prentice