Taking risks with invisible illnesses

Over the past few weeks as I’ve started my new job, I’ve been talking to people about the realities of managing risk when you’re busy micro-managing everything else in your existence. When you have a hidden disability or invisible illness, it can feel like you’re constantly working on  the balance between being functional enough to get through life and still making sure that people understand that you do have access needs and they still need to be respected. It can be enough to simply get out of bed, shower, eat enough food, earn enough money and get some (or indeed any) sleep, so the idea of wilfully inviting change when you’ve got the balance just so is daunting, to say the least. It’s so much easier when you’re exhausted from the simple act of existing to accept that existence is enough. However, human beings are risk takers by nature. We are adaptable, sociable, reward-driven beings, and we want progress. Progress only comes with taking a chance.

You will have to take risks

This might seem like an obvious thing to start with, but you do have to take risks. You do. Yes, you. You, reading this right now. Risk is inevitable and it’s important. If we don’t try, we don’t give ourselves the opportunity to succeed, we don’t give ourselves the space to grow, and we don’t honour all the wonderful things we have the potential to be. Even when your life is predictable it’s hard to take that leap, but it’s even tougher when you don’t know if you’ll be able to function tomorrow, whether the new venture will be accessible for you, whether there’ll be enough bathrooms in that new office building or if people will understand that you need to go for walks sometimes and you’re not sure how long you’ll be.

I was always a big believer in calculated risk. You work out the variables, you work out the possible outcomes, you have as much of a plan as you can before you commit to a course of action, and you know if it doesn’t quite go your way, you have other things to rely on. However calculated risk needs a base point to work, a known quantity, something you know is reliable. When your body or your mind is not reliable, if there’s no base point to work from, the sheer concept of trying to work out what might happen is often just a loop of unknown or TBC. It can make it really, really hard to try and put yourself out there, but you have to, otherwise you’ll never get a chance to experience the life you deserve.

Some of those risks won’t pay off, and it can hurt

Everybody has experienced rejection. Rejection sucks across the board. Rejection particularly sucks if you feel like it was personal, tied to something intrinsic in your identity. Rejection particularly sucks if the reason is something which for others might be easily changed, but for you is completely impossible. You just need to give us a little more time! Lose weight, it’s easy! Just study more, you can find time for that, right? A few less bathroom breaks, and we can consider you for the promotion next time.

Accessibility of opportunities is a big problem. It’s easy to brush it off and say that people who say those kind of things aren’t a good fit for you, that there’s plenty more opportunities out there, that you just have to keep the faith. Keeping the faith is easier when your body isn’t still tired after ten hours of sleep, when you don’t have a multitude of voices telling you you’re garbage every day. It’s easy to say there’s more opportunities when you’re a person who fits almost all opportunities, and it’s easy to talk about being a good fit when you fit in almost everywhere  you go.

Some of those risks feel like they carry a bigger price

I spoke to a friend who currently has a colostomy bag about her current experiences around personal risk. She became single after having a stoma put in, and she’s tentatively trying out dating again after a respectable time alone to get used to her body again after her operation. For her, men turning her down was manageable. She could confidently say she was being proactive, taking control of her life, putting the possibility of love on the table. However, her first yes terrified her. How would she tell the dude that she, as she so beautifully put it, has a “shitbag” without him turning in to a shitbag?

It’s hard to put yourself out there. It’s harder when the world tells you that in some way you are not desirable or valid. The stakes are raised. It’s a lot of pressure to meet them.

Sometimes, even when it goes well, it kind of doesn’t

You took a chance! Get you! It actually paid off! Even better, right? You start the great new chapter of your life and suddenly, your body starts misbehaving. You’ve put it into a new gear and the engine is stuttering. You’re not getting enough sleep anymore; you haven’t had the energy to do the washing up for days, a shower exhausts you, your stomach is fucked, your brain is two steps behind all the time. It can feel like it’s not worth it, that it’s too much, and hey, maybe it is. But maybe, just maybe, this is just the start of training up. This is another 5kg on the barbell. This is the next 5k on your run. This is that leap from GCSE to AS level, from Undergrad to Postgrad. Maybe it feels hard now because it is hard now. Maybe it will become easier with time, and patience.

Sometimes, it’s not possible – and that’s okay too.

Sometimes you’ll take a chance and it won’t work out. Sometimes you’ll take a chance, take the leap, and have to subtly crawl back to the starting post. For most people, once they’ve taken the risk, made that leap, they can confidently manage the change. If they can’t, the reason they often give is “it’s just not for me.” The emphasis is on the change not being right for the person; it gives the person the upper hand, the choice in the matter. It is an entirely different feeling when the truth is closer to “I’m not for it.” Whether it’s that the change isn’t manageable with energy levels, or it triggers off an unexpected stress response, it’s a horrible feeling to have to say “no, I can’t”.

Able people will tell you you’re being defeatist. They’ll tell you anything is possible, anything at all. The reality is, admitting you need to take a step back isn’t admitting defeat. It’s simply tracing your way back through the maze to find the right route. It might feel like you’re not being strong, but you are. You’re admitting you need more support. You’re confronting the problem at hand. You’re working out a new path. You’re investigating a new risk, the risk of telling somebody that you need their support and love, and that is a brave and challenging step in its own right.


Take the leap again, when you’re ready. Surround yourself with people who will help you if it doesn’t work out, and live a life full of chance, change, and opportunity that works for you.


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