10 honest thoughts about chronic illness and going it alone.

(This post was first published on Medium on 24/01/2017)

I’ve had a chronic illness for a few years now. I’ve read dozens of articles about life with the debilitating effects of chronic illness and hidden disability. When you’re bed bound for long periods of time, sometimes all you can do is try and reach out and find others that are in the same boat. Unfortunately, I’ve never read a single one that speaks to my experience of it. Every one I’ve started reading end up talking about a loving husband or wife, being able to access money, or having a comforting hug with a dog. Some of us don’t have that immediate support network, and are put into the position of having to work to support ourselves despite our bodies demanding we don’t.

Of course, many of us aren’t truly alone. We have friends, work colleagues, family nearby. Some of us, however, do live alone, and work full time with chronic conditions to keep afloat.

With that in mind, here are 10 things from the side of living with and managing chronic illness, invisible disabilities, and other similar conditions that aren’t talked about as often.

Anger is an emotion you feel often.

Anger gets a bad rap as far as emotions go. We’re all encouraged away from confrontation, and it’s implied away from anger too. However, anger is an important emotion, a vital part of being alive, and importantly, not something which will disappear if you bury it inside you. If you bury it, it will turn into self-loathing, which is not something you can make space for if you want to survive. So you start to try and allow it. If it isn’t helpful to express it to the person or thing that’s made you angry, you find another outlet for it. Baking. Long walks. Meditation. Just framing it differently can help — realising you’re angry at the circumstances, not the people around you. Realising it’s okay to be angry and disappointed at your life.

People will be angry at you too, for a range of reasons. Mostly, it’s because you don’t fit the narrative. If you work hard, you should get rewarded, right? If you aren’t getting better, or getting ahead, it’s because you just aren’t trying hard enough. It’s probably similar to the feeling you had towards yourself. If I just work harder, I won’t fall behind. Unfortunately, that narrative is a sham. It’s just most people aren’t ready to hear that yet. They may never be ready.

Anger needs expression or it becomes resentment, which doesn’t help anybody. Anger wants recognition, so you try to feel it, allow it, express it (responsibly!) then move on with your life.

Love is something you experience strongly.

On the other side of the coin…People will reach out. Sometimes it’s your close friends and family. Sometimes it’s somebody you never realised cared for you like that. People who you thought were acquaintances become allies. You appreciate it. You make sure they know you appreciate it. It’s important to love them fully back too- if you have energy to socialise, prioritise the people who prioritise you. Get them over the house, if possible. Having other people in your space makes it feel like home.

Sometimes, your love can feel overwhelming to others, because you appreciate them so much more- their circle remains big, yours is small. It can take some adjustment to work that out. The best people will be patient through this.

It’s a cliche for a reason- when you get into tough straits you learn who your true friends are. People who were close to you for their own reasons melt away. You might be very surprised who comes through for you- I have people in my life now I thought only tolerated me that have been staunch confidants, and waved goodbye to people I thought were my sisters. I am very, very lucky to have many dedicated friends, and I am very grateful for all those people, even the ones who couldn’t stick around.

People will give you advice for able bodied people. All. The. Time.

That’s all most of them know. They mean well but you learn to be careful. Sometimes it can feel like you’re in a horror film. You know those moments in the movies when the stalwart companion says something that makes the lead realise they were the killer all along? It’s like a muted version of that.

Say, for example, they encouraged you to leave your job. When you do, they say “now you can find something that makes you happy!”, not realising it’s the stress of working itself that’s wearing you down and now you’ve taken their advice you might not be able to find a post that considers disability at all… They were the killer all along. Or they talk about you being single, saying things like “now you’re free you can get in shape, hit the town and find somebody perfect for you!” without acknowledging that all your energy is taken up by working and you can’t get to things to meet new people? They were the killer all along. Convincing you to spend energy on things that jeopardise your health, failing to acknowledge there are fewer opportunities for disabled people, assuming that you have the consistency for long-term plans or the worst, thinking that if you do the right combination of things you’ll be cured…

There are a million small things that to able people are an unconscious part of their day that are conscious consideration for disabled and chronically ill people, and it’s so easy to be suckered into believing life can be like that again… but honestly, most of the time it can’t be, and it never will be again.

The harder you try, the harder it becomes.

The very worst thing about chronic illness and hidden disabilities.

People rarely acknowledge what they can’t see. Visual cues inform so many things to the vast number of the public. So if they see, for example, somebody get up out of a wheelchair to walk a few steps, they assume that person doesn’t need the chair. Even though that person might not be able to walk more than a few steps, they’ll be judged a faker. They might as well have not bothered even trying.

If people see you trying hard, they will hold you to the best day they’ve seen you do. That’s not just the DWP doing that. It’s every able bodied person I have ever met. I am not exaggerating in saying that. The only people who don’t do that is people who have experienced bad health conditions, disability, or chronic illness.

So we’d be better off not trying, right? Well, that goes against all human nature. You never going to stop fighting to be the best you can be, you just get used to the range of disappointed looks you get when you don’t hit that (the jaw clench of frustration! The squint of barely trying to understand! The huff of “you’re not fun anymore!”)

And anyway, quite aside from whether we want to try or not, most people still have responsibilities. Rent, or even a mortgage. Kids. Pets. Debts. You are responsible. If you don’t deliver, nobody is going to catch you.

The world loves spontaneity. Which is the one thing we can’t do.

The world revolves around the fetishisation of being spontaneous. Live the life you want to today! Book that holiday! Go to that event! SAY YES!

People are obsessed with it, and it often feels that if you’re not being spontaneous you’re letting yourself down. It’s an incredibly damaging sentiment to most people, but especially the chronically ill. You try and be spontaneous. You pay the price for it. You have a health crash. You miss work. You don’t have anybody around you to pay the bills if you don’t work. You panic, get even more unwell from stress. You prioritise stability. You have to prioritise stability. You wonder if you’ll ever be “fun” again.

Your achievements are different and timey-wimey shit happens.

Kept your house tidy? Worked a whole week? You’re a rock star. This will feel more difficult when people start to get married, have kids, get that promotion, or… actually become a rock star. Your immediate world becomes smaller. Achievements become smaller. When you’re looking into the minutiae to find your answers, time also feels like it’s moving in a different way.

Of course, this happens when you get older anyway. Suddenly months seem to pass quickly, but it’s even more jarring when you’re desperately trying to survive each day whilst years tick past. Imagine you’re swimming with a rock tied to your leg. You’re trying to go forward into deeper waters, but the rock drags you down too. You have to keep afloat. Every so often, the water and gravity and the rock bobbing up for just a second gives you some relief. So you look up… and all your friends are freely swimming towards the horizon.

Support networks are there for support… until they’re not.

It’s not always easy to find common ground when the only thing you have in common is that your body is trying to kill you… but also, weirdly, it’s the biggest thing, and in the worst times is the only common ground you need. Support groups can be a mixed bag. Some only show you the negative in people’s lives. Some show you only people who live with daily support networks you can only dream of. I avoid them for both those reasons. Other people’s mileage may vary.

Social media is a fickle beast in turn. It means very different things to different people, and helps and hinders in different ways. Sometimes, if you see people living exciting, varied, spontaneous lives it’s damaging to the soul. Sometimes it’s inspiring to see the world keep moving on, to see children grow, to see your friends blossom. Sometimes you want to shout into the void. Sometimes, especially when you live alone, it’s your only contact with other human beings. Social media can open up the world, but also show you too much of it. Sometimes, you need to look to yourself, and tend your own garden instead.

You can’t always get what you want. And you probably won’t get what you need, either.

Plenty of people can’t be there for you, or will only offer you the help they want to offer you… Because that’s how it works. A lot of people with chronic illnesses get (rightly) really upset at that, and turn that anger inwards (see point one). However, it’s not because we’re not good enough, and it’s not because those people are bad people. It’s not about you at all really, it’s about what they can handle and what they can feasibly offer… and also, sometimes, what help will make them feel good about themselves. Plenty of people are not willing to change their dreams for their life around the realities of yours. They need to prioritise their own shit. Life is hard for everybody, not just you after all! It’s okay to be angry about this, but let’s face it, you’re in the same boat. You prioritise what you need to survive.

It’s also important to point out that it’s okay to be hurt by this. When your partner says to you “I just can’t be who you need me to be.” When your friend says “We bonded over our hobby and you don’t do that anymore, so we don’t really have anything in common.” When somebody cancels a social plan you’ve worked hard to find energy for. It’s okay to grieve. But then…
Leave them behind. When they say it’s not you, it’s me… believe them. You have to, for your own sanity.

You might not have the life you want. You make the life you need.

I know one other single person with the condition I have and she believes she will die single. That might just happen. It’s a reality we have to face. Things that really are a given to most people — I will have a career, I will get married, I will have a family, I will have a retirement — are not such a given to us.

Sometimes, things feel very unfair because they are.

Sometimes things really don’t make sense, because to be disabled is to meet society and find it doesn’t match your needs. Take cities, for example. They have the best infrastructures, the most accessible arts and culture, the most varied housing stock. They also price us out. We’re angry about that (see point one).

Sometimes things make us feel very afraid, because we’re trying to do things in an empty house and realise that if we got sick alone and hurt ourselves nobody would know.

So you make adjustments where you can. I take my phone everywhere in case I fall. I carry a cane even though I know I’ll never willingly use it because I hate how people treat me with it and I can cope without. I date people short term so I don’t have to deal with the questions about the long term. I sacrifice things that aren’t useful to me. I don’t have time for vanity over my weight; it’s enough that my body decided to function today, thank you very much.

I carve out a life I can manage, and I grieve the life I lost daily.

Loneliness is understandable.

And it’s sad. And it’s real.

It’s hard to admit you’re lonely. Loneliness when you’re surrounded by people is a strange sensation. However, loneliness is about more than just whether you can talk to others; it’s about whether you can communicate. Often I just feel like I’m constantly negative. Like all I talk about is the hard times, but honestly? That’s because it’s really fucking hard most of the time. It’s life on hard mode. It’s carrying that boulder chained to your foot. It’s working against a society that wants to pretend we don’t exist. It’s seeing your friend’s eyes glaze over when they’ve offered all the advice they have and you can’t take it. It’s hearing again and again about other people’s partners or families sticking by them because they loved them and wondering why it wasn’t like that for you.

Loneliness is sad, it’s real, and it’s an epidemic. We owe it to each other to try and be as empathetic as we can… and maybe, if we try to deal with that, all the other things will become easier too.



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