There’s two things that happen with chronic illness and disability. One; your body will change irrevocably. Two; you are not supposed to care.

Here’s another two things. One: other people will react to your appearance. And two; they will expect you not to.

Your caring about how your body looks – when you “should” be caring only about how it is or isn’t functioning – will cause consternation, confusion, and judgement.

After all, isn’t your perceived attractiveness the least of your worries?

The short answer is no.

The slightly longer answer is absolutely fucking not.

We are groomed from birth – and by we I do mean women in particular, but everyone – to care deeply and bloody-mindedly about our appearance. To spend time, energy, and vast amounts of money on any aspects of our bodies that we can manipulate to make ourselves more appealing to each other.

There are many aspects of chronic illness that are not sexy. It’s not sexy to cringe when someone touches you because it’s a high pain day. It’s not sexy to sit on the side of the bed every night and slowly go through the motions of downing the latest disgusting concoction, and twenty plus capsules and pills. It’s not sexy to have to deal with the many side effects of those pills.

I have fought hard to gain back my sense of myself as a woman, after losing that under my illness. I became Ankylosing Spondylitis first, Sarah second. My body has changed beyond my comprehension, and I have little control over that. I can’t not have arthritis, and I can’t stop taking my medication. It is what it is.

But I realised that one of the reasons I wasn’t allowing myself to interact positively with my body was because I was afraid of people judging that.

The horrible thing is, I liked my body the most when I was at my sickest, mentally and physically. I was dangerously underweight. And yet I felt triumphant when I looked in the mirror. What does that tell us about what women are taught? We must be as small and take up as little space as possible. Skinny is the new black, always.

Since then I have become rounder and it has been a struggle to accept, though I keep reminding myself this is not just a medication side effect. It is a reflection of growing health.

Hair loss has been a similarly difficult side effect to come to grips with. A common occurrence with chemotherapy, it nevertheless took me by surprise. And then it took a good chunk of my self esteem. I might as well have been holding handfuls of my confidence in my fists, instead of hair.

This, combined with my weight gain, and the roundness of my face due to prednisone, stole any love I’d had left for a body that had already betrayed me in so many ways.

It got to the point where I refused to look at myself in the mirror, because it was simply too upsetting. This might sound minor but it’s actually quite hard to avoid all reflective surfaces, and to be driven to do so is a key indicator that something is really wrong.

I stopped wearing makeup because none of it could cover the underlying issues, and I couldn’t look in the mirror to put it on anyway.

I felt like neither myself nor anyone around me would ever find me attractive again. And while it’s true I have a lot of other things to worry about, this was extremely significant. No one wants to look in the mirror and feel repulsed. That doesn’t change just because you’re sick. If anything, your need to love yourself only gets stronger.

Not to mention – wasn’t physical attractiveness the key to obtaining a date, therefore a relationship, therefore a marriage, a house, and a baby – only the most important measures of success for a woman in our society?

Finally, I spoke with a group of close friends about how I was feeling. They not only reassured me that it was ok, normal, and reasonable for me to care about how I look – that my womanhood didn’t disappear the moment I became disabled – but they gave me some practical ideas for tackling the issue.

They didn’t placate me by telling me I was beautiful as I was. I think they could tell that that wasn’t going to fly. Instead, they validated my worries about being accused of vanity – because while women must care deeply about their appearance and put all the work into maintaining it, they must never appear to care. And after validating my feelings, they made suggestions.

One of the suggestions was to find out about getting a wig. What I didn’t know was that the government provides a wig subsidy for anyone undergoing chemotherapy treatment. I discovered this after calling the Cancer Society and feeling like a fraud. My enquiry went something along the lines of ‘I’m sorry, I don’t have cancer, I’m really sorry, do I still…? Could I qualify…? I’m really sorry.’

The woman I spoke with was truly lovely and sent me the information on how to apply for the subsidy and get a wig.

I also visited Look Good Feel Better. I didn’t end up going to a class with them, but what it did tell me was that there were many other people out there feeling like I was – and that it was ok to care about your appearance, even in the face of complex health situations.

Instead of getting a wig just yet, I decided to get hair extensions. And boy, did I feel bad about doing it. How dare I spend money on such ridiculous luxury when I have a chronic illness and all the expenses that come with it? How dare I?

Well. I dare because one of the expenses of chronic illness is helping my body and my mind deal with what’s happening to it in the best way possible.

And boy, do I love my new hair. I’ve never had very long or thick hair, even before getting sick, so this is entirely new to me. I started off getting the longest ones possible, but that proved unsustainable because they attach directly to the hair that is left, and because that is so fragile, the weight of them meant they just snapped my hair and fell out. Which obviously is going to make me lose even more hair overall. So my hairdresser cut them shorter and while I was sad about it, they are still a million times better than my natural hair. My hairdresser has been amazing, too. She knows my situation and she’s so kind and I can’t thank her enough (I got to Untouchables in Nelson). I also want to make a sidenote here for anyone who is interested that extensions are Not As Expensive As You Think. If you want to know more about this, feel free to message me.

So. Maybe my vanity is unbecoming, maybe my money should go elsewhere, maybe my energy should go into going to yoga classes and not straightening my hair or learning how to put on makeup – but you know what? Fuck that.

I’m the one who has to live with this illness. I’m the one who’s had to relinquish so much control over my body. I’m the one who lost sight of my self confidence and who couldn’t face myself.

So if I can claw any of that back? If I can do one thing that makes it easier to look in the mirror every day?

You can better believe I’m gonna do it.

You can call that whatever you like.