I won’t sugar-coat it, living with a chronic illness can be ruddy hard. And I mean beyond the actual chronic or condition part of it. I’m talking about the expectations and understanding of other people.
Speaking from experience, that’s a different kind of struggle. So many people in the world do not understand (or choose to not understand) the idea of living with a chronic, invisible, mental or “unusual” illness. They talk about how we could be fixed with yoga or by going vegan, and say “oh we all feel like that sometimes, I’m sure you are fine” (that just sent a shiver down my spine, ugh). Normally, these are the same people who brag about never having to take a sick day and boast about how they push through when they are unwell. Good for you my dudes, but that’s not life for a lot of us.
Thanks to this unknowing misunderstanding or deliberate closing of ears, talking about chronic illness is now a much bigger hurdle than it should be. Especially in the workplace. The idea of talking to my bosses about my conditions makes me go full Eminem, palms sweaty, knees weak, mom’s spaghetti. But it’s something that needs to be done. So, at each job I have had, I have made sure to talk to my boss about my chronic conditions and I’ve found it has improved my quality of work-life tenfold. So for any fellow spoonies out there, let me show you what’s worked for me, in the hope it may work for you too!
1. Decide who to tell and how to tell them.
Currently, I work in events in a Higher Education setting. So I essentially work in a small team, within a bigger team, within a large team, within a huge team. Not all hundreds – nay thousands – of employees need to know about my conditions, nor would I want to tell them all! It’s only my team who I work with on a daily basis who really need to know; the small team made up of my boss, my supervisor, and my colleague. There are so many ways that you can discuss your chronic conditions with your team, and it all depends on your type of workplace. My friends who work in big fancy pants finance offices have found it best to arrange one-on-one official meetings, whereas other friends in hospitality have just caught their supervisor in the corridor. For me, I found it best to bring up at my orientation meetings, when the people who needed to know were in the room.
2. Be as open and honest with your team as you can be – or want to be.
That doesn’t mean telling them every single symptom and day-to-day play. Seriously, no-one needs to know about my PCOS stomach problems. But when I was chatting with my team about my conditions, I made sure to give them the key points. “So, I have a few chronic conditions and health problems that I thought you should know about…. No, my asthma only flares up following temperature changes. Yes, I do have asthma attacks but they are rare. Yes, they follow a similar pattern – asthma attack into chest infection, only normally off sick for a week… No, PCOS isn’t just period pains, it’s a hormone condition. Yes, it’s normally controlled fine – you might just find me with a hot water bottle in the office. Yes, I love the options of work from home days and will ask to work from home if the pain is too bad”. I’ve found telling them enough information so they understand, but in enough words so it’s bitesize information has been the most effective. And if any of them want to know more or have specific questions, I’m more than happy to answer them! Educating people is the future, after all.
3. Not everyone will understand.
For me, this is the hardest part of working in a team environment. Not everyone will understand or want to understand – these are both very different things. For those closed minded, ignorant folks who don’t want to learn, I’m very good at ignoring them and their comments. But those people who simply don’t understand? That’s harder. I’ve had a colleague say to me “oh you are always in the wars, aren’t you!” after I had moved a work from home day to a Monday instead of a Wednesday to accommodate my PCOS pain. I know their comment wasn’t meant to be harsh, but because of the connotations that come with chronic illness, it came as a blow. Bundled with my health anxiety, I started to worry they saw me as a slacker or someone they couldn’t trust. Thanks anxious brain.
I’ve learnt not to take it personally – some people just don’t quite get it, even if they try. With that in mind, it’s worth noting that whilst I am open about my asthma and PCOS in the office, I don’t talk about my chronic anxiety disorder. Some of the conversations I’ve heard about mental health have been challenging and I don’t want to open that conversation with people who will not understand. However, I manage my disorder so well that I do not need to raise it to my team, and my institution is very open about taking mental health days. But discussing it with the wider team is just not something I need to do. This choice does not affect my ability to work. If there ever comes a time when my anxiety does affect my ability, then I’ll raise it with the people who need to know.
4. “Oh I’ve never taken a day off sick!”
My biggest pet peeve on the whole planet? When someone flexes about never taking a sick day off work. It just makes me want to scream into my hands, bang my head against my desk, throw something at the wall. This ideology is rife in every single workplace I have been in and I can’t put my finger on why. Well, I can – it’s the inbuilt discrimination against disabled and ill people that is in every aspect of our society. But that’s a post for another day. Anyway, back to that ideology. We need to remember that this ideology plays into the idea that we live to work, when we should be working to live. This is important for everyone, but even more so for chronically ill folk. We can’t work through when we are unwell. And that should be the same for everyone. Just remember that.
5. Speaking up changes the game.
I guess this is the overarching point of the whole post. If you speak up, speak to your bosses about your conditions, you are supporting yourself. Not only that, each time someone is open and honest in the workplace about their conditions, you are helping pave the way for other chronically ill people to be confident and open too. I know that sounds horribly cheesy, but it’s true! My supervisors know about my health so they can support me when it gets rough. It makes my team run more effectively as we know what to do if I am unwell, and that means we know what to do when other folks are unwell. Yes, it’s ruddy hard to have a chronic illness, but by talking about it, we can alleviate some of the hardship.
Whilst I live my life and my work life by these rules, I know that everyone is different. You might not be comfortable talking about your health, your workplace may have very different structures, or there may be other reasons, personal to you. But do remember this; you are worthy of a happy and supportive workplace at all times. Most workplaces have a disability policy, some even have an illness and long-term condition policy. If you are unsure of where to start or what the vibes are in your workplace regarding health in general, I would suggest giving them a read. We should all feel supported enough in the workplace. Sometimes, we have to take it in our own hands, and make that change.
Rosie x
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