Balancing a new diagnosis and Work

I was diagnosed with IBD in 2010 after a fast and aggressive onset of symptoms. I was in 6th year and diagnosed shortly after my Leaving Cert mock exams. So, except for part-time jobs I had as a teenager, IBD has impacted my entire working life.

Unfortunately, my IBD took a serious turn, and I ended up with a perforated bowel, sepsis and an emergency colectomy just 6 weeks after diagnosis. I spent the entire summer in hospital and missed my exams. I had planned to train as a hairdresser so luckily this didn’t disrupt my plans, but I of course missed my graduation and the rite of passage that comes with finishing school which was tough.

I did my 4 years hairdressing training despite it being so physically demanding (the benefits of youth) and then I went back to train as medical secretary. I guess having such a profound experience with my health so young shaped my career choices as I still work in healthcare now! Despite battling issues with my stoma in the early days, ongoing flares, pain and fatigue I was determined to live my life ‘normally’. I worked hard in various jobs and even spent 2 years in Downtown Toronto after moving there alone. I returned home in 2019 working another full-time demanding job. I prided myself on being productive and ‘high functioning’ despite my limitations. I continued with education doing both a digital marketing diploma and training as reformer Pilates teacher all while working and saving hard. I bought a house last year with my boyfriend and was so proud of what I’d achieved. I envisaged my future to be busy and took for granted I’d continue to grow in my career and be more ‘successful’.

After 12 years of stubbornly thinking I could have it all, I learned that we make plans and God/Mother Nature/The Universe laughs. I began developing joint pain which I put down to the IBD until one day it was agonising, and I couldn’t walk or bear any weight on one of my feet. I endured a long wait to see private Rheumatologist. In the meantime, with no idea what was causing me this pretty intense pain, I tried to carry on as normal. The physical symptoms coupled with anxiety meant this was quite a challenge.

My work was getting busier and more pressurised, and I was constantly needing to ask for time off to attend appointments. I still had no answer to what was causing my symptoms, so it became difficult to focus on anything else. My fingers swelled up like sausages so you can imagine typing wasn’t fun! The stress was aggravating both conditions, one of which remained a painful mystery. I felt a mix of giddy with tension and unable to sleep but also completely drained and like my limbs were coated in glue. It was like my mind was on double speed and my body had been slowed right down. I had an unpleasant combination of a caffeine brain and a sedated body. Driving was difficult on painful days, so the commute alone was a struggle. One evening, I was home alone when I almost blacked out. I phoned my dad in a panic to come over and sit with me as I was scared to be alone. I knew this was simply anxiety and my body screaming at me to listen to it.

In February I made the decision to leave my job. I felt complete terror at the thought of not having a full-time income. I had just bought a house! I also felt ashamed that I couldn’t work at that pace anymore. Maybe I just wasn’t trying hard enough? I felt I was ‘lazy’ or that I’d let my partner down after entering into such a big financial commitment together. Not having a diagnosis made me question if my struggles were valid.

My family and partner reasoned that if I continued as I was, I wouldn’t be able to pay my bills anyway as I’d end up so unwell, I’d be forced to stop. They encouraged me to put my health before anything else. I visited my GP who also felt I was completely unfit to work. I gave in and resigned. For the first time since I was 18 years old, I was unemployed. I spent 3/4 weeks in absolute self-care mode. I rested guilt-free, ate well, meditated, journalled, read books, walked (when I could) and just enjoyed my slower pace of life and the lack of any pressure. My only focus was making myself as comfortable as possible every day and listening to my body after ignoring it for so long.

Incredibly, less than a month into my ‘career break’ I received a call from a recruiter about a role I didn’t even remember applying for. The role had been parked some time ago but they were ready to revisit potential candidates and found my CV to see if I was still available. The role was part-time and almost fully based from home. I would have limited commuting, no shared office loos, the support of my sister who lives 2 doors down, and my beautiful garden to sit in if I needed to take 5 minutes. A comfortable sweatshirt and leggings would be my uniform most days unless I had a meeting or external call. I could stuff my beloved hot water bottle into my leggings without any office side-eye. The hours would make it much easier to fit my appointments in and after running the numbers, I knew I could comfortably pay my bills and mortgage. I met the CEO, my soon-to-be new boss, and it was an instant brilliant fit. I was honest from the get-go about my reasons for leaving full time work and my wait to see a Rheumatologist and I’m lucky the team were so supportive.

A few weeks into my new job, I was diagnosed with Psoriatic Arthritis that on top of joint pain and

inflammation, causes fatigue. I now had 2 chronic conditions to contend with but at least I had an answer to why I was in so much pain! The double-whammy of autoimmune fatigue along with the mental exhaustion of trying to accept a new diagnosis wasn’t easy.  However, my new working pattern and lifestyle was much more accommodating.

I’ve been in the role 5 months, and it is going really well. I can give my full effort to the job but still have capacity to look after myself. It’s the best decision I ever made. I believe the saying that if you don’t make time for your wellness, you will be forced to make time for your illness. My health is still up and down as it tends to be with chronic illnesses, but I have a lot more ‘fuel in the tank’ at the end of a working day now. I have the time to prioritise all the little parts of my routine that support my wellness. When we’re super busy these things can take a backseat but having chronic illness means I notice a change for the worse when I let these things slide. I’m also training to be a meditation teacher and these skills have been so supportive. 

I would say to anyone who is struggling at work to try being honest with your manager about what you need but also be honest with yourself. Review your budget and outgoings to see can you reduce your hours. You may think it’s not feasible but with a detailed look you may find there are things you can cut back on. For example, I saved money on commuting, buying lunches etc. so am at less of a loss than it initially seemed.

For employers, if someone on your team discloses a condition, be proactive and ask them how they are. At their annual review, ask them what you can do to support them at work. We all do our best work when we are feeling well and supported. Understand they may be worried to come to you. I would also like people to realise the unpredictability of some of these conditions. We may be fine on Tuesday and rubbish on Thursday.

For anyone considering working less, your mental or physical health is a very valid reason. You don’t have to be a parent or in the later stages of your career. I am in my ‘prime’ working age, but my body is not and that’s ok. It’s ok to admit that you matter more than any career or company ever will. Do not burn yourself out to keep up appearances. I was also guilty of comparing myself to other people who were doing ‘better‘ than me. I now know that no-one else has walked my path and I must make choices based on what I want or need rather than what I have been conditioned to think I ‘should’ want.

Working while navigating IBD can be tough. There may be days you can climb a mountain and days you can barely climb out of bed. Either way, you deserve love and kindness so make sure you are giving it to yourself.