Trying to manage a career with chronic illness can be a major challenge. Because let’s be real, trying to look after our health is a full-time job in itself! Between the constant medical appointments, fatigue, brain fog and everything else our conditions throw at us, there are no days off! So adding a career in the mix piles even more onto our already heavy plates.
Which is why so many of us living with a chronic illness choose not to work, or just can’t. Because our health always comes first! There is no one-size-fits-all approach when it comes to chronic illness, and that includes how we approach work.
Now, I don’t say all of that to sound all doom and gloom. Because the truth is, many of us want to work, or are already working, but managing a career while living with a chronic illness comes with so many challenges.
It’s not only about doing your job well; it’s about working through the daily impacts our health has on us at work.
So, if you’re currently working or looking for work, stick around. Let’s work through some practical ways to manage a career with chronic illness, without sacrificing your health.
The Real Ways Chronic Illness Can Impact Your Career
As debilitating as my chronic pain can be, I’ve never wanted to give up on working. It gives me a sense of purpose, accomplishment, and, to be honest, it can be a great distraction from chronic pain.
That’s why I’ve always had a job in one way or another, whether it’s part-time, full-time, contracted or self-employed. I’ve done it all.
But let me be real, none of that has come without challenges. Because, as much as I know that I am capable (and damn good at my job), chronic illness is a constant pain in the ass that has impacted my career each step of the way.
Surprise, Surprise… Another Flare Up!
One of, if not the most, frustrating parts about living with chronic pain or illness is how damn unpredictable it can be. No matter how much planning we do, some days our bodies look at us like ‘Lol. Nope!’
And just like that, we’re forced to sit our asses down, sometimes for a day or even a week.
Flare-ups can have a mind of their own, and each one can look different each time. One day it’s a dose of intense pain, the next it’s severe fatigue and nausea, or a combination of all three!
And just like that, your perfectly curated to-do list, big meeting or the important email you were ready to conquer? No can do!
That’s where the frustration sets in, because mentally I’m prepared, even excited to work. But my body? Yeah, it’s on a completely different page.
Absent Today, Burnout Later
Having a chronic illness often means we are required to attend multiple medical appointments, which most often fall slap bang in the middle of the working day.
And as much as we’d love to reschedule them for a more convenient time, they aren’t optional. They are essential in managing our condition and enabling us to function day-to-day.
There have been countless times when I’ve had multiple appointments, while trying to meet work deadlines and keep on top of my workload.
And even though I’ve been transparent about my health with (most) of my employers, and they try to be understanding, there is still a lingering feeling of guilt. Which often leads to overcompensating and burning myself the fuck out, trying to catch up on all that I’d missed whilst tending to my health.
Chronically Misunderstood
I’ve said it before, and I will keep saying it. Chronic illness does not look the same for everyone!
It isn’t always visible, which is probably one of the hardest parts about managing a career with chronic illness.
We may look ‘fine’ on the outside, all while dealing with intense pain, extreme exhaustion or brain fog on the inside. Which often leads to so much misunderstanding.
People assume we’re exaggerating, or question why we need certain accommodations, when we “seem okay”.
Over the years, I’ve heard it all, like “at least you didn’t have to come to work” after a few days off sick. Meanwhile, I’d been writhing in pain, unable to eat, sleep, or formulate a sentence without screaming in pain.
Even when managers or colleagues do say they understand or try to be supportive, unfortunately, there is still that lingering feeling that they don’t really mean it. And unfortunately, based on past experiences, I’m often right.
Being judged or disbelieved all the time is exhausting.
Sometimes it feels easier to stay quiet and not advocate for yourself, just for peace of mind. Which should never be the case; chronic illness is not our fault.
Career FOMO
This one should be stamped at the top of my LinkedIn profile. I’m very ambitious and confident in my abilities. I’m always ready and willing to take on a new challenge and progress within my career, but chronic illness can make that incredibly difficult.
I can’t count how many opportunities I’ve lost or had to turn down, not because of my abilities or because I didn’t want them, but because I knew my body couldn’t handle the stress, travel or hours.
Or, because I’d already taken a lot of sick leave, and there was always that unspoken question of whether I could be relied on for the role.
It’s so hard, watching your colleagues, friends and family move forward in their careers, while you feel stuck! Not because you’re not capable, but because health always says ‘NO. ’
No matter how hopeful we try to remain, we often think about how far we could be in our careers if we didn’t constantly have to worry about our health. It’s a kind of grief that many of us have to face, and often!
Emotion Overload
Aside from the physical toll, chronic illness takes a heavy emotional toll, especially in the workplace.
The stress of trying to keep up with tasks, after multiple sick days, the immense guilt over missing deadlines or meetings, and the pressure to overcompensate to prove your capabilities.
I can’t count the number of hours I’ve spent worrying if people think I’m lazy or judging me for my work adjustments.
No matter how well (deep down) I know I’m doing, there’s always that annoying voice telling me I need to do more. Or fear of losing my job, after yet another sick day.
Trying to manage a career with chronic illness is a constant mental fight that feels never-ending! It’s more than just managing physical symptoms; it’s managing expectations of yourself and others.
The Silent Pressure Of Building A Career With Chronic Illness
When I first started experiencing chronic pain, I was fresh out of university and had just landed my first real job. That in itself was terrifying!
Real deadlines, assignments and responsibilities. But on top of that, I was dealing with pain I didn’t understand. constantly being dismissed by doctors and being told the pain was all in my head.
There was no chance in hell I was going to tell my employer!
What if they judge me, or worse, what if I lose my job? It was the start of my career, and I could not afford for that to happen. So I kept it to myself and suffered in silence for years!
Why I Stopped Pretending To ‘Be Okay’
But staying quiet came at a cost. I was constantly taking sick days, which inevitably affected my performance and led to me losing jobs.
My bosses had no idea what I was going through. I gave a different excuse every time I took off sick. So I probably came across as an immature, new grad who wasn’t serious about their career. But that was far from the truth. I was just scared!
But eventually, I got tired of the hiding and lying. It was time for me to be up front and start advocating for myself in and outside of work, and I encourage anyone living with a chronic illness to do the same.
There are several ways you can advocate for yourself at work.
8 Ways To Manage A Career With Chronic Illness
I hope I haven’t scared you so far, but I’m always going to be honest. I don’t have to tell you that there is no easy ‘fix’ for chronic illness.
And although the working world is becoming more inclusive, the workplace still isn’t the most accommodating for those of us trying to manage a career with chronic illness.
That being said, here are things you can do to make managing a career with chronic illness a little easier.
1. Know Your Rights
Knowing your rights and any help you are entitled to at work can make managing your career with chronic illness a lot easier.
It doesn’t have to be super complicated. And no, you don’t need a lawyer on speed dial either.
For example, in the UK, the Equality Act 2010 requires employers to support chronically ill or disabled employees. They have a legal duty to make reasonable adjustments for employees with disabilities, physical or mental health conditions, to ensure they are not disadvantaged at work.
That could mean allowing remote work, part-time hours, flexible hours, or providing equipment to help you do your job more comfortably.
It’s all about having things in place to help you safely do your job and look after your wellbeing.
But knowing your rights isn’t just about the HR policies and legal jargon; it’s about giving yourself options.
When you are aware of what your employer is required to do, you’ll have the confidence to be forthcoming about your illness, set boundaries, and confidently ask for help, without guilt.
It’ll help quiet the nagging voice telling you you’re being difficult or have no right to ask for help.
Understanding the accommodations available to you can also help stop burnout in its tracks. Instead of staying silent and pushing through when you have no energy left to give.
No, you’re not making excuses. No, you’re not asking for too much. You’re listening to your body and honouring its needs, whilst still showing up and enjoying your job.
And most importantly, knowing your options helps you feel empowered. Chronic illness can often make us feel like we have no control. This is one way to take your power back.
2. Set Boundaries That Support Your Health
Whether you’re self-employed, work for a company, freelance, or run your own business, setting boundaries is critical.
Not the scary kind, the ones that help you manage your symptoms, protect your energy and prevent burnout.
If you work for an employer, boundaries can look like:
- Taking regular breaks.
- Speaking to your manager about flexible hours.
- Saying no to extra hours or work.
I know you’re there to do a job, but it’s also your employer’s responsibility to make sure work isn’t negatively impacting your health.
If you are a freelancer or run your own business, establishing boundaries is even more important.
Because when you have autonomy over your time, it’s even more tempting to push yourself to overwork. Which will eventually lead to a serious case of burnout followed by flare-ups.
So, treat yourself like you would a friend or family member. Block out time between meetings or clients for rest, even for just 10 minutes. Don’t over-cram your schedule.
You could also consider increasing your rates. I don’t mean astronomically, but enough to allow for longer rest periods or appointments.
You can also space out your projects or clients to help you work fewer hours whilst still delivering high-quality work.
And if you’re an overachiever and juggling a 9-5 and side hustle, all the above matters even more. Trust me, I’ve been there.. I was working full-time and had a side hustle in the evening. And I took on way too much.
Guess what?…
I crashed and ended up taking time off from my 9-5 and having to pause my side hustle.
No matter what work looks like for you, remember that having boundaries doesn’t make you weak or lazy; it makes you human.
Everyone has their limits, chronic illness or not. Boundaries give you space to take care of yourself whilst still doing the work you enjoy.
3. Communicate With Confidence
Opening up about your chronic illness can feel daunting, but open and confident communication is key, whether you’re employed or your own boss.
I’m not saying you need to share your entire medical history, but being open about your needs will help others better understand and better manage a career with chronic illness.
It could mean speaking to your HR department about staggered working hours. Or setting clear expectations around deadlines and working hours with clients.
And it doesn’t need to be a big, intense conversation.
It can be as simple as saying- “My health condition can affect my energy levels at times, so I may need to take more regular short breaks when that happens”.
No long speech, just your requirement, and why it’s necessary.
Open communication helps others understand your condition, what support they can provide, and helps you to advocate for yourself.
4. Build A Flexible Work Setup
Having a flexible work setup is key to managing a chronic illness. Flexibility can mean different things – adjusting your hours, work pattern, location or workload to match your health needs and energy levels.
If you’re employed, this could mean adjusting your hours or working remotely.
If you’re self-employed, it could mean scheduling compulsory rest breaks, or attacking work during your energy peaks and saving simpler tasks for when your energy is a little lower.
Another key part of having a flexible work setup is comfort.
Last year, my home office was a joke. My chair was uncomfortable, my desk too small and low, and I was positioned wrong. My back was in bits, and my neck constantly hurt.
Investing in a standing desk, laptop stand, ergonomic chair, and foot rest changed the game. I’m a lot more comfortable and productive.
Flexibility in your work routine and workspace not only helps you to take care of your physical health but also allows you to show up to work as your best self, without constantly feeling uncomfortable or unprepared.
5. Redefine Success
Recently, I was on the train and overheard a woman talking to her friend about her sister. She mentioned that her sister had to leave her job as a graphic designer because of some health issues and a recent surgery.
While she was recovering at home, she started redesigning existing brands and logos just for fun and sharing them on social media.
What started as a creative outlet began to gain traction—her following grew, and before long, companies started reaching out to collaborate.
Now she runs her own brand design business from home, sets her hours, and builds her work around what supports her health and makes her feel fulfilled.
I say all that to say, it’s so easy to get caught up in other people’s version of success – working a traditional 9-5, climbing the corporate ladder, promotions and pay rises.
But who the hell decided that was the only definition of success?
Everyone’s path is different. And when you factor in chronic illness, the ‘typical’ path isn’t always practical – or an option we even want.
Like the woman’s sister, you can build a career that supports your health, makes you money and brings you joy.
The choice is yours. And remember, moving forward slowly is still moving.
6. Set Yourself Up For Success
Managing a chronic illness with a career is far from easy, but the right tools and habits can make things easier.
For instance, pacing can help you manage your workload and health without burning out.
Use planners, timers and reminders not only to manage your workload but also to schedule in rest. They may seem like small, obvious things, but they can make a big difference.
Lastly, don’t be afraid to ask for help, whether from your manager, colleagues, friends or family. Asking for help isn’t a sign of weakness. It’s a sign of strength and self-love.
7. Create A Support System
Support systems, whether you have a chronic illness or not, are crucial. No one should have to face life alone. Having a healthy support system can have such an impact on how you manage your illness and progress through life.
Your support system could be friends who understand your challenges, medical professionals who specialise in your condition, or life coaches who specialise in supporting people with chronic illnesses.
Having allies who truly have your back and understand your situation can provide not only emotional support but practical support that’ll help you thrive in your personal life and career.
So, don’t be afraid to reach out to friends, family or even make new connections in the chronic illness community online. It will remind you that you are not alone, but may also give you tips and encouragement to help you manage a career with chronic illness, as well as your personal life.
8. Career Alternatives That Might Work Better
A traditional 9-5 isn’t always the best for those of us living with chronic illnesses. Set hours, commuting and extreme stress aren’t sustainable when your health has to come first. But that doesn’t mean you can’t build a fruitful and fulfilling career.
There are plenty of options that offer flexibility, freedom, and space to rest when needed. Here are a few options you might consider:
- Remote & freelance work – Roles like copywriting, web development, or project management are a great way to use skills you already have while crafting your day around your energy levels and symptoms.
- Flexible or part-time roles – Think customer service, virtual assistant or volunteer work. These options allow for shorter shifts or more flexible work schedules.
- Creative – It could be selling on Etsy, creating digital products, or teaching an instrument. Creative career paths allow you to build a business on your own terms.
- Online jobs – It could be online tutoring, user testing, social media management or working as a call centre agent; these roles eliminate travel and let you work from home.
So many living with chronic illnesses have found that either one or a combination of the above has worked for them.
Like offering project management services as a freelancer, during your peak energy times, and running an Etsy shop on the side.
The key is to find what suits your needs and allows you to pace yourself.
This may not be the career path you envisioned, but success doesn’t have to be working a 9- 5 behind a desk.
It can be doing creative work from your bed, using skills you’ve already learned, and earning enough for you to live comfortably, while finding ways to manage a career with chronic illness without compromising your health.
One Size Doesn’t Fit All – Find What Works For You!
Chronic illness looks different for every person- and so does success.
Whether you choose to start a new career journey, take a step back, or stop working entirely to focus on your health, you’re choice is valid. You are successful either way!
And if you’re working your way through managing a career with a chronic illness, here are a few things to remember:
- Track your symptoms and energy, and build your routine around them.
- Celebrate small wins – cleared your inbox on a flare day? Left your job to prioritise health? That’s a win!
- Prioritise your health over the toxic ‘work hard, play later’ mindset.
- And most importantly, constantly remind yourself: you are enough and are doing enough!
I’m proud of you!
I’d love to hear what has helped you manage a career with chronic illness. Feel free to drop them in the comments – it might be exactly what someone else needs to hear.
Pin to read later!
