Tag Archives: living with chronic illness

Of Chronic Illness and Unicorns

Life is like riding on a magical flying unicorn.

Getting a chronic illness is like that unicorn getting a puncture or losing an engine or something.

Okay, that didn’t make a lot of sense.

I originally devised this analogy with a hot air balloon, but then I thought about how fun it would be to draw unicorns with rainbows and stars and stuff, and I had a long and sensible think about how important it was to me to be clear so my audience would understand me which, in hindsight, wasn’t all that long and sensible, and now I’m finding that the unicorn is far too square to be hammered through this round hole, and what I’m trying to say is that this whole analogy is going down.

But that’s kind of the point.

When you get a chronic illness, your life becomes a nonsensical descending unicorn and the only way to keep it in the air is to carve off big heavy chucks of yourself and throw them away.

If you’re not too ill, you might be able to keep your career afloat, but only if you throw out half your social life and all your hobbies. Or perhaps you choose to throw out half your job; you work part-time but you keep on top of your groceries and housework and you get to see your friends just as often as before.

But if you’re very ill, if doctors slap adjectives like “severe” on whatever it is you have, your unicorn might not be able to carry much at all.

I threw out a job. I threw out study. But it kept getting worse. The unicorn got shot—

—so I rarely left the house, but then it caught fire—

—and I gave up all housework.

For two years, I had the adjective “severe” and a very unhappy unicorn.

I still had my partner. He supported us financially, did all the housework, and helped me when I was sick. But we no longer had a normal twentysomethings relationship. Our friends were taking each other out to bars, having cheeky shower sex, taking selfies while skydiving, bathing in smashed avocado, and firebombing napkin factories. (Or something. Being housebound leaves you a bit out of touch, so I had to extrapolate from sitcoms, social media and inter-generational war opinion pieces). We were different. My partner held my hand in waiting rooms and only slipped into my shower to stop me collapsing in the heat.

People told us how surprised they were that he didn’t leave me and how wonderful he was for staying.

(He is, of course, wonderful).

Because I was such a burden.

The guilt was worse than my illness. Which—to clarify for anyone who hasn’t been so physically destroyed that they’ve spent an entire day perfectly still, not able to move to get food, water, visit the bathroom, text anyone for help, or turn on Netflix—is really saying something.

I apologised to my partner non-stop. Every time he did a chore, got back from work, or paid a bill I hadn’t contributed to, I told him how sorry I was.

But it wasn’t enough. It didn’t soothe the guilt.

I started apologising for no reason, just because I suddenly remembered my broken body, just because he comforted me, just because I still existed. I woke him in the stupid hours of the morning to beg forgiveness. If I had been capable of leaving the house, I would have followed him all day, popping up in a flurry of ImsosorryImsosorrys during bathroom breaks and conference calls. And actually I have a phone and am resourceful enough to achieve a similar effect while lying half-dead on the couch at home.

In short, I was overwhelmingly annoying.

He sat down to talk to me about it.

I could see he wanted to reassure me, and I saw the whole conversation play out in my head. He would say all the nice things I’d heard before, that we were getting by without me working, that it was only a little more housework than he would do if he was living alone, that it wasn’t a problem to schedule his day around my doctor’s appointments. And, ace in the hole, none of this awfulness was my fault anyway.

And I knew that I would pull a face and nod and say okay, but not really be convinced.

Because I would know, deep down, that he would only say all this because when you care about someone you don’t want them to feel like they’re weighing you down. (Even if they are). And maybe because, if you really care, you think it’s worth carrying their associated awfulness.

But the conversation didn’t go like that.

He told me that I make him laugh every day. He told me I am fun. Even when I am housebound. Even when I have to lie perfectly still and can only communicate through facial expressions. He told me I make space for him to be himself. He told me he likes to hear what I have to say about things, and that I make him look at the world differently. He told me that he wants to be around me.

Instead of denying I was a burden, he told me I was carrying him too.

It was special and wonderful and surprising. A big heap of surprising. A fully-functional-unicorn-load of surprising.

I hadn’t realised I had all those things on my unicorn. Right up until then, I believed that if my ability to earn money and do other useful labour fell and smashed into a million pieces, there wouldn’t be anything worthwhile left of me.

But now maybe I do.

Sometimes. Almost.

At least I try to believe it, which doesn’t mean I succeed all the time, but I’m getting better with practice.

And I think that there are a lot of people like me out there who have papered over their self-worth with jobs and projects and busy-ness, telling themselves it’s all integral to who they are.

It’s not.

Nothing is secure. Not your job, not your body, not your abilities.

But you don’t need any of it to be someone.

I am no longer plagued by the adjective “severe”. It took time, but now I can look after myself, prepare food, leave the house and work from home. Commuting is tricky, and I need lots of breaks and sick days, but that’s still a lot of easy reasons to value myself. Sometime I even forget I’m sick, but I always try as hard as I can to remember what I am underneath.

Because I like a challenge. Because while it’s great my partner likes me, it’s my opinion that matters. Because the future isn’t guaranteed.

Because a magical unicorn isn’t going to do it for me.

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One of the illustrations from this story, Analogy Unicorn, is available in my store now!

If you love my stories and comics, check out my Patreon page. You can support my work and get unique rewards!

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How to Get a Cat: An Illustrated Guide

For the last couple of years, I have sat at home all day alone.

alone

Chronic illness can do that to you. It hasn’t been too bad, really. I don’t live alone, so I have company for non-working hours, and some wonderful friends and family members visit and take me out on my good days. A lot of people with my illness have it much worse.

But still.

Being alone wears you down.

(Even a super introvert with social anxiety disorder and occasional agoraphobic leanings, like me.)

So, easy solution, I got a cat.

We were renting and weren’t allowed pets, so it only required us to spend all our current and future money to find a house, sign over our souls and move, just before Christmas, the worst time of the year to do anything other than eat gingerbread. It was no trouble at all.

I like cats. I had a cat when I was growing up whom I loved to bits.

Although, actually, it was me who ended up in bits. That cat was a psychopath. When I was eight she invented a game where she would lurk outside the bathroom when she heard the shower. She would pick a natural bottleneck—a doorway, the hall—and wait for me to emerge, vulnerable, wrapped only in my towel.

attack1

attack2

Sometimes that’s all she would do. Just watch me as I edged past her, staring with pouncing eyes, knowing I was nervous. Other times…

attack3

Remembering this, I thought a great deal about the type of cat that would be best for us. And it turned out my partner and I had met a lot of other types of cat over the years that we didn’t think would suit.

the-floor-is-made-of-lava-cat

We didn’t want the kind of cat that hates people so much it lives on top of bookshelves whenever anyone is around.

no-touchies

We didn’t want the type of cat that pretends to like you, but acts as though it will catch fire if you actually touch it.

murdercat

We didn’t want the type of cat that murders animals larger than itself in the dead of night, then eats their entrails. I know people who live with this type of cat, and since the Possum Incident, they haven’t been the same.

seen-some-things

Armed with a clear picture of what we didn’t want (literally, see cat types 1-3 above), we walked out of the shelter with the complete opposite. The most clingy, affectionate cat to ever exist.

He needs to be close to people, either sitting tucked under your chin or participating in whatever you are doing, at all times. For the few days after we took him home, he only stopped cuddling and kneading on my throat for eating or pooping (his eating or pooping, not mine).

He’s getting better at separation, but he can’t handle being left out of things. He follows me from room to room. He watches as I brush my teeth. He pounces on books and my computer so he can play with them too. When we do the dishes, he claims the rinse water as his personal paddling pool. Tiny, prickling claws are involved in every activity, and if you try to stop him, he climbs you with them.

It’s kind of like living with an affectionate cactus. Or wearing a scarf made of hedgehogs.

It’s very different to my previous experiences with cats. Showering with my old cat in the house was like starring in a B-grade slasher movie. My new cat turns showering into one of those romances that are supposed to be swoonworthy but are just super, super creepy. He won’t let me shut him out of the bathroom. He sits in front of the shower glass, sometimes with his face pressed up close, sometimes playing with the water droplets he sees running down my side of the glass that he can never catch. Sometimes, if he can paw the door open a crack, he jumps in.

(I let him in the first time because I thought it would teach him a Valuable Lesson about consequences and personal space. It didn’t. Now he thinks darting in and out under the sprinkling water is part of the game.)

As a human, that kind of thing gets you restraining orders. As a cat, it gets him whatever he wants.

He’s a whole new type of irritating cat.

codependent-cat

But I love him.

And I’m not alone.

not-alone

 

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You can find four of the illustrations from this story in my store! The Floor is Made of Lava Cat, the No Touchies Cat, the Murder Cat, and the Extra Strength Co-dependent Cat.

If you love my stories and comics, check out my Patreon page. You can support my work and get unique rewards!

And don’t forget you can follow me for updates on Facebook, Twitter and Instagram. (I recommend Instagram if you would like to see pictures of my cat playing the sink).

I have a friend with an autoimmune disease, and I need your help.

I have a friend with an autoimmune disease. For anyone unfamiliar with how autoimmune diseases work and why having one sucks, it’s basically when all your white blood cells and other bits and pieces of your immune system are over-enthusiastic action-movie heroes who think ‘destroy everything’ is a mandatory step in the process of saving the day.autoimmune1Imagine being the city at the end of an Avengers movie. That’s how my friend feels most of the time. Unsurprisingly, she also gets lots of viruses and infections. autoimmune2She frequently comes down with tonsillitis. To stop this happening, she just had her tonsils removed. The procedure went about as well as these things do.

autoimmune3And she was fine until her immune system decided to save her from the painkillers.

autoimmune4autoimmune5autoimmune6autoimmune7

She was so unwell and in so much pain that she had to go back to hospital. This was not unusual for her. She has been to hospital 5 times in the last 6 months. She sees her GP about as often as she sees her mum, more often than she sees me.

I know what you’re thinking. You’re thinking: these medical comics are no Awkward Yeti and this is kind of a bummer story.

You’re right. I’m no Awkward Yeti and this is kind of a bummer story. And it’s about to get worse.

That statistic on how many times she has been to hospital in the last 12 months? I had to ask her for it when I sat down to write this because I didn’t know it. Even though I consider her one of my closest friends, she doesn’t always tell me when she ends up in hospital. She only told me this time because on that particular day I happened to message her to check up on her recovery. And in that message she apologised profusely for having to tell me bad news.

That’s why she doesn’t tell people. She doesn’t want to be a downer. She doesn’t want to force a nasty reality about life and illness on other people. She is afraid that if people get bad news every time they talk to her, they will stop.

Hearing this broke my heart a little bit.

It can be difficult to talk to people about chronic illness. It feels socially unsafe to bring up in conversation, and even the people who care don’t always want to hear about it. Perhaps because they want you to be happy and healthy and it hurts to know that you’re sick, so it’s easier for them to avoid all reminders.

With my collection of medical conditions (depression, assorted anxiety disorders, chronic fatigue syndrome, fibromyalgia) I get it. Or maybe I should say I kind of get it. Although I feel that social pressure to shut up, sit down and not rock the boat, I’ve never been very good at submitting to it.

Whenever someone dismisses my anxiety and tells me I’m just being ridiculous, I smile and get through the conversation. And then I draw a comic that touches on anxiety and publish it here.

When someone says that because I have depression I must make up stories for attention (true story … or is it?), I smile and get through the conversation. And later when I find other people who are drowning in emptiness I listen to them and then talk to them about what depression is and isn’t.

Every time someone shuts down discussion when I mention my chronic fatigue syndrome or completely ignores the effect it has had on my life, I smile and get through the conversation. And then drop my chronic fatigue bomb into the next one too.

And I was happy doing that privately. I would have gone on with my tiny rebellions for years, maybe my whole life. But then one of my closest friends apologised for telling me she was so sick she had to go to hospital, and that changed things.

My rebellion is going public, and I’m recruiting.

autoimmune8

Please talk about illness.

I know it’s hard and maybe you don’t know how and it feels too awkward, but life is about doing hard things.

You can start small. Acknowledge it in conversation when it comes up rather than gliding past it. Think about how that person’s illness might impact your plans together and, if it would help, offer to make adjustments. Ask them how they are doing. Listen to them, and let them tell you the truth. Ask follow up questions. Let them make jokes about it. Let them scream about it. Say Voldemort, not You-Know-Who.

Unless you are a hermit (…with an internet connection who follows my site), I guarantee that among your circle of family, friends, colleagues and acquaintances there is somebody with this kind of illness. Autoimmune disease, thyroid conditions, endometriosis, anxiety disorders, polycystic ovary syndrome, chronic fatigue syndrome, severe back pain, lingering physical injuries, fibromyalgia, Parkinson’s, MS, depression—I have names associated with each one.

When my friends end up in hospital I don’t want them to feel they should hide it. I want them to feel safe enough to tell people when they are so unwell they cannot get out of bed, in so much pain they vomit, or falling apart because waking up to the same struggle each and every day is becoming too much to hold together.

This is a bummer story, and I do not apologise for it. Maybe it’s awful to hear a friend is going through all that, but it’s far worse not to hear.

Please talk about illness. Take away its power to isolate already vulnerable people. Help me make a world where my friends will always know they can say something. I can’t bear the thought of them facing it alone.

“Be Positive”: As helpful as the Microsoft Paperclip

And who wants to be like the Microsoft paperclip?

I have chronic fatigue syndrome (cfs). One day in March last year I came home from university placement feeling drowning-tired and crawled into bed expecting to sleep all weekend and be better by Monday. That was over a year ago, and I’m still waiting for that magical Monday.

There’s a lot about having cfs that sucks (shocker). It sucks that on bad days I’m so tired after showering that I need to lie down. It sucks that my once-serviceable memory appears to have sprung a leak and I now have to make checklists to remember basic daily things. It sucks that reading is tiring, that writing is even more tiring, that if I draw too many blog-pictures in a day I start to feel sick.

It sucks that my short-term goals had to be dramatically altered—from ‘start a career’ to ‘maintain a blog’, from ‘make money and save up for cool stuff’ to ‘maybe sweep the floor if you’re feeling up to it’.

But what I hate the most is when people, usually after hearing about my altered goals, tell me that I shouldn’t think like this, that I’m being ‘too negative’ and I should ‘be positive’.

I hate this for a whole bunch of reasons. One is that it’s actually normal to feel bad when bad things happen (and unhealthy to bottle that up). Another is simply because being told what to do and how to feel is a universally loathsome experience. But the main reason I hate it is because it twists the word ‘positive’ into something inverted and monstrous. And I think the reason I feel so strongly about it is that because before I got sick it was my view of ‘positive’ too.

In this sense of ‘positive’ my recovery is not only certain and imminent but it will be the glorious restoration of my life. To ‘be positive’ I must stay focused on that and ignore this ugly illness business, which is ‘negative’.

This version of ‘positive’ is saying that being sick is being broken. It says that I don’t have a life now and I shouldn’t think about and plan for this not-life.

Here’s the thing. What if I never get better?

You want to know something scary? Not everyone recovers from cfs. Most people—the vast majority of them, in fact—do improve, but some don’t, and there’s no way to tell where I fit into those statistics.

So, hypothetically, what if I never get better?

What if I never get better and the only things that matter to me are things I can’t do while I’m sick? What if I spend my entire life planning for when I get better rather than living now? To me, that doesn’t sound like a good mindset. That is not positive. I don’t want to die of old age 60 or 70 years from now bitter that my ‘proper’ life was stolen from me when I was 24.

Don’t tell me that I’ll get my life back when I am better.

Tell me that I have a life now and will have it until I die, whatever else happens.

It won’t be the same life I would have had if I’d never become sick, I know that. Like I said, there’s a lot about having cfs that sucks. Sometimes that makes me sad. But sucky things happen in all lives to all people. Cfs might give me a different life with different sucky things, but it will not give me lesser one.

And I’m not writing this to convince everyone else to rise up in chorus and say the things I want to hear. I’m writing it because maybe I can convince myself to.

Because I will have a life. Just watch me.