Working while chronically ill is tricky. And it’s tricky to talk about too. Which is exactly why I want to write about it. The thing is, when you have a chronic illness life fibromyalgia, working can be a necessary evil, incredibly empowering, or utterly unattainable. Or anything in between those options. It really is a case-by-case and can be dependent on your meds, you lifestyle, the severity of your illness, the type of work, etc. I mean, there are just so many factors involved! It can be kind of overwhelming to talk about. But here we go!
Deciding to Work
Okay, I know this sounds weird. Does anyone really choose to work? Don’t people work out of necessity? Well, yes and no. There are some people, including some with fibromyalgia, who honestly can’t work. Heck yes they would work if they could, but their symptoms are so severe that even minimally active or demanding jobs are too much.
Other people with fibromyalgia have the option to work from home. Honestly, if you ask me, this is pretty ideal. It allows you some flexibility to work around your symptoms while still making an income for yourself and/or your family. Plus, there is less energy exerted in interacting with coworkers and getting ready for work.
If you’re like me, you’re well enough to work an office job. Thanks to my medication, supplements, lifestyle changes, and alternative treatments, I (finally) have my symptoms under control enough to work in an office. This has been about a year in the making, so trust me when I say I’m incredibly grateful. But also trust me when I say that not every day is easy or symptom free. In fact, no days are symptom free. It’s just a matter of being manageable, and that’s where my symptoms are probably 95% of the time these days.
I am always incredibly impressed and inspired by those with fibromyalgia that hold more physically demanding jobs. I know that movement tends to help fibromyalgia symptoms, but for me and my body, a physically demanding job just won’t work. But for others, it works great. Or it’s a necessity. Either way, it’s downright impressive.
But here’s the thing. As with most things, it’s all about listening to your body and understanding what works best for you. Of course, there are other factors involved in deciding to work. It’s about understanding your needs (financially and otherwise), your values, and your abilities.
Decisions to Make Once You Start Work
If you’re able to work, then you know that every single day is about making decisions. And that all starts with making the decision to get out of bed, which to be honest, is sometimes the hardest decision you can make all day. Not only are beds super comfortable and cozy, but when you’re in constant pain, your meds are still making you drowsy, or the fibro fatigue is just way too real, sometimes it may seem impossible to actually get up. So the first thing I do each morning is take account of how I’m actually feeling, instead of letting my meds or mood dictate my actions.
I try to set myself up for early morning success by getting to bed at a reasonable hour. I’m definitely one of those people that needs at least 8 hours of sleep, if not more. If I don’t get enough sleep, I tend to flare and be completely worthless, so I really try to focus on catching those z’s.
Another big part of making sure I feel good enough to work is making decisions based on how I feel or how I know something will make me feel. For example, this evening, my parents invited me to go to dinner with them and a family friend. As nice as that may be, I also know I’m utterly exhausted after working a full day, and the food served at the restaurant would most likely make me feel horrible either tonight or tomorrow. So I made the decision to stay home.
When you start a new job, you also need to consider how you spend your days off. For me, it’s all about recooperation. I try to prioritize rest, not only for my body, but for my brain too. I need to recharge so I can be at my best when I’m working. I’m an introvert, so this often involved quiet time alone, or doing something that brings me some joy. You have to figure out what helps you be your best at work while also letting you live a life you actually enjoy.
One of the biggest decisions anyone with a chronic illness has to make when starting a new job is deciding if/when to tell someone at work about their illness. This is SO dependent on what you’re comfortable with and what the people at your work are like. I tend to be pretty open about my condition, as spreading awareness is incredibly important to me. But not everyone is comfortable sharing their illness with the people in their workplace. Unfortunately, there are some people in this world who do not believe in what they cannot see. They question our motives and our realities. There are some that just can’t understand, or refuse to try. And as wrong as that is, it’s still something we all have to be aware of in our workplaces. So this is a decision that is not only dependent on your openness, but also on the open-mindedness of others. Regardless of what others do, just make sure to do what’s right for you.
Work can be exhausting. Working while living with fibromyalgia can seem impossible. But just like with everything else, it’s all about finding your balance, and figuring out what works best for you. There are a lot of decisions to be made and remade on your journey of working while living with fibromyalgia. But I promise you, you will figure it out. Don’t forget, if you need some help or support, reach out to your friends and loved ones. And you always have a support system here.