Something I’ve worried about since I was diagnosed with Inflammatory Bowel Disease was working and whether I could have a ‘normal’ job. I put ‘normal’ in quotations because what is a normal job really?
The second part to that is having a chronic illness, and multiple surgeries, has changed me and changed what I wanted in a career.
I’m someone who has always craved having their own business, especially seeing my mum doing since I was born, and for me being my own boss is perfect. So I’m growing my own business, around my health and that’s what works for me.
But I’m still curious about working a more traditional career path; I’ve been asked a lot of questions about it! Plus, the one time I attempted it, I ended up in hospital! So I wanted to learn from people who are doing it. How they had conversations with their employers, how they manage flare ups and fatigue and how they cope.
There is no right way to live with a chronic illness and for some (including me), working a more traditional 9-5 isn’t possible. However, I’m a firm believer in your chronic illness shouldn’t stop you from doing what you want to do.
Which is why I reached out to some fab spoonies who have shared their experiences of working with a chronic illness.
Sophie is training to become a Chartered Surveyor and is in the final part of her training which involves spending 6 months in each of 4 different departments to gain an understanding of different areas of the market, before completing a final assessment. Sophie has ME / CFS, EoE, FND, IBS and mental health conditions.
Billie is an Account Executive at a Healthcare PR company and has Ulcerative Colitis and a stoma.
Lizzie is a healthcare assistant in an adult general hospital and has CFS/M.E. severe IBS, and gastroparesis.
Hayley is a Marketing Coordinator for a large Shopping Centre in Wellington, New Zealand. She has Ulcerative Colitis, and in January 2020 had my large intestine removed and now have a temporary ileostomy.
Were you worried about going into the working environment with a chronic illness?
Sophie : Returning to work after almost a year off due to my illnesses was a daunting prospect. I was worried about not fitting back into the office, people excluding me and how I would manage to work and look after my health.
I spoke to HR and they arranged for me to have a meeting with Occupational Health, who I have been working with ever since. They helped work out adaptions that could be made for me in the office and with regards to the length of working days, to help alleviate some of my concerns.
Going back to work on a phased return has been really helpful in allowing my body to get used to working again. I started with a few hours a day 4 days a week and before lockdown, I was working 6 hours a day 5 days a week, so over a 6 month period, I had made massive progress.
Since lockdown, I have been working full time from home, and I have seen so many benefits from it! I have missed out on a lot of the social aspect of my job, and I’m yet to find a way in which I can really join in with that, so that is something I still struggle with.
Billie : I’m about to go into a new working environment in September and I’m not worried about this role. In previous positions, my condition hasn’t been understood but this time I was very upfront.
My social media and blog; where I share my condition and stoma; is on my CV. It’s actually the reason I got into my profession. So my new employer knew about my condition before I even got to interview.
Upon receiving the offer letter and having conversations with HR, I handed them a document explaining how I manage my condition. It included a rundown of my hospitals, a brief explanation of what my stoma and ulcerative colitis are, what a bag leak constituted of and how I manage them.
I explained the regular hospital appointments I need and included an estimation of how long my appointments take; making it clear I would work this around my diary.
By being open and upfront, Ive found it much more relaxing going into a new job.
Lizzie: I’ve been ill for 8 years, and it was only this year that I could ever consider the thought of getting a job! I just wasn’t well enough to have one.
Working seemed like a scary prospect, I had instantly linked a job with worsening of my health, so I waited a long time until I felt ‘stable’ enough to get one.
My worst fear was getting a job, then having to quit after a few shifts because my health just wasn’t good enough for it – this happened 4 times at the start of my illness and I really didn’t want it to happen again!
Hayley : When I first entered the work force it was always something I was really conscious of and hoped it wouldn’t affect the quality of my work, or my ability to show up to my job.
When I got the job I am currently in, I was in remission for Ulcerative Colitis, so it’s not something I was concerned about at the time. I think it would always depend on whether I was flaring or in remission as to how I approached each job I got.
I don’t like to let people down, so always hoped I wouldn’t get really unwell to the point where I was always missing work.
Did you find it easy to have a conversation with your line manager about your health?
Sophie : As I rotate around different teams, I end up with a different manager every 6 months, so I have noticed a huge difference in how easy it is to discuss with my line manager about my health.
I’m lucky in that I have people in my current team who actually get it, and my line manager is very approachable and easy to talk to.
Occupational Health produced a report on my health and my conditions which is given to my manager so that has been really helpful, as it means they get a lot of the background without me having to explain it all.
Billie : I haven’t had this conversation yet, but my pretty open about my condition and haven’t got any reservations talking to people about it.
Lizzie : I work in the NHS so we had to fill out an Occupational Health Questionnaire online.
I think doing it online felt a lot easier to me to be open and honest – sometimes I find actually saying the words aloud (either in person or on the phone!) can be quite daunting.
Hayley : I have always been really open about my struggles with my health, and was always up front with my manager about my chronic illness and what it means for my day to day life.
When I was in remission, it wasn’t something that ever affected my work, but when I was unwell it had greater impacts.
Being open and honest means you can communicate when you are feeling unwell or overloaded, as stress is a large contributing factor to this illness. So when things were getting too much, having the ability to communicate that was really important.
Have you had to make any changes/provisions for your health? If so, what were they and have your employers been helpful with it?
Sophie : Reducing my hours and a phased return to work have been two ways I’ve had to make changes for my health. Overall my work have been helpful with it.
Although something that would massively help me get back to work properly is to be able to work from home a couple of days a week, as the commute is the most exhausting part of my day. However, as a graduate, I am expected to be in the office as part of my training.
I’m hopeful that after the experiences over the past few months I might be able to do that more in the future.
Lizzie : My job involves a lot of standing up, so I’m allowed to take ‘micro-breaks’ where I can sit down for 5 minutes every hour (doesn’t sound like a lot but it makes a big difference!).
I also don’t have to do 12-hour shifts like most staff members – instead I can do 6 or 8 hour shifts which are far more manageable.
Hayley : Unfortunately due to my illness, as of recently I have required a lot of hospital admissions and doctors’ visits. This has resulted in establishing flexible working arrangements with my manager, as the trust has been built between me and my employer to do that.
How do you manage flare-ups with employment?
Sophie : I think the big things for me here is being kind and gentle to yourself. I know that if I stick to my work/break schedule even on a good day then I can help reduce the impact of a flare-up.
On bad days I focus on the more simple tasks that I can complete and take more regulars breaks. I have actually found that work acts as a great distraction when some of my illnesses are flaring up, so I try to stick to my routine as much as possible.
The industry I work in is extremely sociable, so I have been invited on lunches out when my EoE has been flaring up to the point I can’t eat anything. I’ve still been out with my colleagues for lunch, even though I wasn’t able to eat anything, and I felt like they really appreciated me putting the effort in.
The other thing I have discovered is to not be afraid to take a sick day. It doesn’t make you a bad employee. In fact, I think it makes you a better employee because you know when you are going to be unable to do the job to the best of your ability.
If you don’t look after yourself during a flare-up then you are just going to keep making it worse and may end up making silly errors.
Billie : I don’t have flare ups now I’ve had surgery but I do have bag leaks.
I just explain I have a bag leak to the account lead or meeting host. Telling them I will be 10 minutes, sorting it out.
In previous employment, I have had to go home because a bag leak went through my clothes and I didn’t have a change of clothes at work. I will make sure I have enough bags and a change of clothes at the office.
Generally, my previous employer was OK with that and I would just get in early the next day, to make up for it.
Lizzie : This is the hardest part for me. As anyone with a chronic health conditions knows, health can be massively unpredictable so despite my best planning, sometimes my body has other ideas!
My digestive problems are the hardest to manage – as they can be very sporadic. I make sure I take all my medication, and I use relaxation techniques such as meditation before I go into work because I know that stress and anxiety makes the pain worse.
I only pack foods which are gentle on my stomach (lots of liquids like smoothies or soups!) to try and reduce the risk of flaring while I’m there.
Hayley : When I become unwell with related health issues post-surgery, my employer is really understanding.
I remain open and honest with them as communication is really important to maintain a trusting relationship with my manager. It really helps having a manager who cares about my wellbeing, and puts my health first, so I’m very lucky in that respect.
How do you manage pacing and fatigue?
Sophie: I take regular breaks throughout the day, during which I meditate or practise deep breathing, as these are ways to ensure that I take a complete break. I plan my days using a google calendar, including putting in the breaks, so I ensure I stick to them, as I know it helps!
I try to tackle the most complicated tasks in the morning, and if I have calls I need to make that day I try to do them before lunch as well, as I know my concentration is best during the mornings. In the afternoons I try to carry out less taxing tasks.
I have to do lists for everything and break each task down into really small stages so that I don’t get overwhelmed or daunted by it.
It’s been a steep learning curve to get to where I am, and I’ve had to give up a lot outside of work, but I finally feel I am making progress with it and I’m able to work full time, producing pieces of work that I am happy with.
Billie : Making time for self care out of working hours; whether that is reading my book or listening to a podcast on the way to and from work, or making a list to organise my workday.
Anything that I can do to reduce any anxiety I may feel. Anxiety and stress play a huge role in my fatigue and making it worse.
By being aware of the things that make it worse, I can manage my workday around that. The other thing that really impacts my fatigue levels is my menstrual cycle.
In the week before Mother Nature knocks on my door, I find my fatigue is worse. By tracking my period (with the Clue app) and knowing my body, I can make sure fatigue doesn’t get in the way.
Lizzie : I try not to book my shifts too close together, and allow myself at least 1 rest day in between.
On my days off, I plan recovery activities such as yoga, self-care, and lots of physical rest to make sure I can fully recover. This means that I have to miss out on some social events as I can find these quite draining – but I realize that if I’m working then I have to make myself a priority so I can hold down the job.
I make sure on the days I’m working, I do little/nothing else (as in, I only get out of bed when its time for me to go to work, and get straight back into it when I get home!).
Hayley : I am always really open about when I am feeling unwell. I know when I need to take it easy or have a sick day to allow myself to rest and recover. Ensuring I eat properly and drink enough water, as well as get enough sleep is crucial to ensuring I can be at my best.
Also taking time out to do the things I love outside of work ‘fills my cup’ to ensure I can be at my best at work. I think this is really important to take time out for yourself to ensure you are feeling the best you can. Having a good work-life balance is really important.
Have you had to make changes to your initial career plan because of your health?
Sophie : Due to my health last year, I had to postpone my final assessment to become qualified. At first I was gutted and felt like I had failed, but I realise that even though I wasn’t able to physically go into the office, I could still work towards my qualification through online seminars and reading.
I think that it’s been important for me to remember that there is no set path or right way to do things. We are all individuals and taking an extra year to qualify doesn’t make me a failure at all.
Billie : It has changed my outlook on life and more so, my work life.
My condition is the reason I love healthcare communications. Using my skills in writing and social media to help people has been at the centre of my life.
So, to be able to do the same thing in my work life, for other conditions outside the IBD and stoma community, is what put me on the path in the first place.
Lizzie : YES! I always wanted to be a children’s nurse, but when I got ill I knew that it just wouldn’t be possible. The intense degree of doing fulltime placements along with uni assignments, plus the 12 hour shifts once qualified would just be impossible with my health problems.
But then I came to realise that there are lots of other ways to help people, not just through nursing. And that’s when I decided to change my career path to focus on psychology instead. I’m now 2 years into a psychology degree and my dream role in the future is to be a ‘pediatric clinical psychologist’
Hayley : Due to having surgery this year, this has meant I have put further developing my career on hold for a little bit. My current employer has been amazing with providing me special leave for my time in the hospital, and flexible working arrangements when I am not feeling up to being in the office.
With future surgery planned, I want to remain with my current employer to have one less worry when it comes to having that surgery as they are so understanding.
I still have hopes and dreams of climbing the career ladder, and won’t let my illness stop me from doing that. I also have dreams of one day working for myself, to allow greater flexibility in life.
A massive thank you to Sophie, Billie, Lizzie and Hayley for taking the time to answer these questions! I’ve left links to their social media & blogs if you want to find out more about them.
Takeaways from today’s interview
The biggest take away from todays interview is having OPEN and HONEST communications with your employer, which can be hard.
I’m in a lucky position where I work mainly for myself, and have a really understanding employer for my part time work. Who is understanding and goes out of there way to make sure I’m okay.
However, I’ve also worked at places where just the thought of bringing up my health seems impossible. Especially bar and restaurant jobs! And it’s hard, but if it’s a job you want to stay at and are really passionate about, it’s worth trying. There are laws in place to help you get the help you need.
If you struggle talking to your line manager, go through occupational health and HR, two elements in place to help in situations like this.
And remember, there is no right way to live with a chronic illness. There’s no right career path and you need to do what feels right and good for you. If you can’t work, that’s okay! If you work part time, that’s okay!
But I wanted to create a post to show that there are options and you don’t have to be limited!
These are all questions and worries I’ve had myself and I’ve definitely learnt a lot from it. I hope you’ve found this helpful too!
If you have any comments, tips or questions, leave them in the comments below or send me a DM on instagram and I’ll get back to you!
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