7 Ways I Manage Working with a Chronic Illness

If you are like me and were diagnosed with a chronic illness before finishing your education, the prospect of entering the working world is daunting. How will I manage my career and my health? Will I be working with supportive people? What kind of work is right for me? I never thought I would be factoring in chronic illness life into my career aspirations.

Yet with a year in full-time education and two years out in the adult world with both of mixture of employed and self-employed work under my belt, here we are. And I’ve already learnt a lot along the way.

Work from home & hybrid working

Most of my time working with a chronic illness has coincided with lockdowns. While this is a time when many were forced to work from home, what it did show is that it is entirely feasible to do, especially with the technology we have available today. Working from home, or at least hybrid working, can be beneficial when you have a chronic illness. There is no getting up early for an energy-sapping commute. You are in a comfortable surrounding, you have access to your own food if you have dietary requirements, you can take medication more easily, and not stress about bathroom access (fellow IBD’ers, you’ll know what that’s like).

Flexible work schedules

One of the reasons that self-employed work appealed was having a flexible working schedule. Through my freelance work, I can choose what time I work and manage my hours to suit my health. If I feel like I need to have an afternoon off or a later start to the day, I can do that. Likewise, if I have any hospital appointments, I am able to work around them more easily.

Since starting part-time employment, I do have a certain number of hours I have to work every week, but thankfully the company I work for, which is centred around IBD itself, is understanding and I can work my hours flexibly if needed. If you are employed and feel like more flexibility would help you, have a chat with your colleagues about your concerns. It might be that there is a way to bring more flexibility into your schedule such as starting work earlier or later if needed.

Separate home office

Chronic illness or not, when you are working from home, it is important for your wellbeing that you work in an area separate from the areas where you relax. Even if you don’t have a separate room to be used as a study, try and work somewhere that isn’t your bedroom or lounging area. It might be that you set up a desk in your kitchen, for example.

Break up your day with rest sessions

Break up your day with rest and recharge sessions. Sitting working for hours on end isn’t good for anyone. I like to have a mid-morning and mid-afternoon cup of tea break, where I’ll take a quiet moment to myself and give my eyes a rest from the screen. I then have a longer lunch break for an hour, where I can refuel, and get some fresh air and gentle exercise that won’t use too many energy spoons. This could be a gentle walk or some slow yoga.

Use organisation tools

Brain fog and fatigue are things I am far too familiar with these days. Something which helps is getting clear on my to-do list and prioritising tasks. There are lots of useful project management apps such as Trello, Asana, ClickUp, Notion, Monday.com and more. Alternatively, you may prefer a classic pen and paper planner. Different strategies work for different people, so find what works for you. For some reason, I find a paper planner works best for my employed work and I use Trello for self-employment. It just goes to show we’re all different.

Take your medication

Hopefully, this is one you shouldn’t need reminding of, but if you are on lots of medication that needs to be taken at different times of the day, then set yourself some reminders on your phone and make sure your work knows when you need to have a medication break.

Being self-employed with a chronic illness

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Being self-employed has its benefits when working with a chronic illness. The flexibility, working in a location of your choice and generally working in a way that suits you. There are things to consider such as managing your finances and not having access to sick pay in the same way you do as an employee. I do feel the pros outweigh the cons though. If you are not sure which is best for you, you could try a combination of part-time employment and setting up your own business or freelancing alongside this.

If you are looking to become a business owner with a chronic illness, a good starting place would be reading ‘The Chronic Entrepreneur: How to set up and run your own business alongside a chronic condition‘ by Lisa Porto, who herself is a chronically ill entrepreneur.

Lisa combines her knowledge of setting up a business, adding helpful self-care tips, links to resources and accessibility tips along the way. While some of the information in the book covered similar topics I’d seen before in business books, this was the first time I’d seen it tailored to people with chronic illnesses. If starting a business is new to you or brain fog is getting to you, the language in the book is also really clear and the overall structure is well set out.