The very words, ‘Chronic disease’ or ‘chronic condition’ are incredibly weighty when they’re said to you as a patient. The implications being, there is no cure and you’re never getting better, EVER! At that point, the potential implications on your working life or thoughts about what it’s like working with a chronic illness have yet to start filtering through, past your confusion and despair.
How I started living and working with a chronic illness
In my early days of the fateful diagnosis of multiple sclerosis in 2004, the ramifications escaped me, I viewed it as a mild imposition that flared up intermittently in an acute fashion. I could tackle it with first-line anti-inflammatory medication and return to my normal life, with few if any, noticeable long-term effects.
Then in 2008-9, it started to happen. I lost my ability to walk efficiently (which I now understand could have been mitigated with a more consistent and targeted physiotherapy routine).
Although I was now becoming more aware of the meaning of ‘chronic,’ Believe it or not, I was still burying my head in the sand when it came to adapting to my new life. Mainly because up until this point, I was still able to get on and do day-to-day activities with no major issues.
It took until 2018 for me to start experiencing things quite differently.
My turning point
After having a series of relapses in quick succession, I was no longer able to acquire the steroids I had come to trust, due to the apparent risk of over-reliance. So I was forced to ride it out and try and recover on my own.
Then in 2019, the full gravity of my situation hit home when I ended up in hospital under the care of a Neuro-rehabilitation team, following a sudden and major relapse which left me barely able to walk and struggling to do simple things, like stand up from the couch, or get out of bed on my own. For the first time in my life, I thought about things very differently.
Given the extent of my disability following this relapse, with the advice and support of the Neuro-rehabilitation Unit’s (NRU) Occupational therapy and physiotherapy staff, I created a realistic plan to return myself to full health – relatively speaking, of course – and began my journey of getting back to my life and work. And for the first time, I was forced to really think about what it’s really like working with a chronic illness.
I hope the advice and coping strategies I lay out below are of some comfort and assistance for anyone battling through something similar. And I also hope they can provide important insight for others who might have colleagues or team members in this position.
First things first, be honest:
I once disclosed Eczema on a job application form when they asked if I had any pre-existing health conditions, thinking it was an appropriate condition to mention; I was only 15 and clearly misunderstood the reasons and practicalities of such a question. But stupid answers to legitimate questions aside, in the UK, your employer is legally required to support you and make adaptions as needed to ensure you are safe in your work environment and able to get on with your job. As such, remember to inform your employer about your situation and perhaps meet with your line manager and HR to discuss the situation, your condition, how it might affect you. Together ( Ant with Occupational Health, if you have one) you can work out what adaptations are needed.
Until now, I’ve never required any adaptions but when I returned to work, I realized there were some key factors that really helped make my work environment and my experience so much easier when it came to working with a chronic illness.
What makes working with a chronic illness challenging but manageable?
Access to facilities
Since my relapse, the majority of office-based employees have been working from home because of the pandemic. But even though COVID has meant that everyone has been home, I’m lucky enough to have an employer whose always been very open to home working, something which has made a huge difference given my chronic condition.
Had I needed to be in the office, for the first time I realized that I would definitely have required a lift to access the building and my floor.
As well as suitable building access, having access to facilities is also something that has been critical to me during this relapse. Having a shorter distance from my desk space to the bathroom was critical in the early stages of my recovery and had I been in the office, this would have also been a requirement.
Flexibility, understanding & mental health support
Chronic diseases are not like acute conditions where a visible, identifiable symptom is treated and then goes away. With chronic disease, a large proportion of your illness is hidden and is often seemingly unrelated. In clinical terms, these are referred to as ‘co-morbidities.’
There are 3 very common co-morbidities when it comes to chronic disease, especially neurological illness.
Fatigue is not like tiredness or sleepiness due to a late-night or exercise. Instead, it’s an onset of extreme tiredness that’s out of proportion to any recent activity that you’ve done. During my time in hospital and for the first couple of months after I came out, fatigue was a big challenge for me. It affected me in a way that I’d never experienced in my life before and at its worst, simply getting ready and dressed in the morning would drain all my energy and leave me completely depleted. it’s lucky I was able to manage my time accordingly, starting early and taking a rest after getting ready before starting my workday, as well as working from home.
Depression is horrible but given the enormity of your diagnosis and the persistent symptoms that accompany it, it seems reasonable to search unendingly (and often to no avail) for some kind of explanation.
Though it’s hardly surprising that depression can set in due to the mental strain you experience living with such a condition day in and day out, it’s something that often gets overlooked, and something that crept up on me. Luckily I work for a company that offers mental health support as one of its benefits. A benefit that I hadn’t made use of before and couldn’t be more grateful for now having needed it.
Stress is the most obvious product of the combination of the previous two co-morbidities. one of the worst things about something like MS, in particular, is that stress is also one of the things that can cause flare-ups, so managing your stress effectively is critical.
This makes it important to have an open dialogue with your manager about workloads and any challenges. Of course, stress is part of working life, but while in my earlier years before this relapse I would have dealt with any stress internally, now this isn’t an option and I see the value in openly talking things over. Something I think many more people can benefit from generally.
Coping strategies when you’re working with a chronic illness
Saving your spoons – Managing fatigue when you’re working with a chronic illness
Regardless of how well-rested you may feel, make no mistake, fatigue WILL be a part of your day, the only response is to take some time out to rest. This may seem like a massive inconvenience, but I, or rather others, have some sound advice on the matter:
- Coined by Christine Miserandino, spoon theory refers to the idea of finite balance of energy resources and the effect of energy depletion (i.e. running low on spoons). The idea is to ensure you’re never short on spoons and make energy-based decisions with an eye on your current available resources. Bear in mind, when out of energy there is not a whole lot you can do about it. Every type of activity from Bathing, eating, and making phone calls, or socializing comes at a cost!
- Based on the above theory, structure your day accordingly and try and avoid consolidating extended periods of activity physical, mental, or otherwise
Dealing with depression when you’re working with a chronic illness
Depression is natural but can be mitigated if you pursue whatever makes you happy; far easier said than done since the very notion of ‘happiness is subjective and endlessly debatable. There are many books and sources of reference claiming to have an answer but ultimately it’s personal and entirely in your control. One thing I can advocate, from personal experience, is meditation; taking time out to clear your head – of negative feelings and everything else – in order to relax and mentally reset has done wonders – even in the midst of a busy working day, finding just 5 or 10 minutes to meditate can make a huge difference from my experience.
Depression is also associated with loneliness, so joining a group for meditation can be advantageous to combat both and also add purpose and commitment.
Depression is a complex and very individual experience, can be crippling and can quickly spiral out of control, I don’t claim to be any kind of guru or expert on the topic but the way to control this outcome is to identify and evaluate these three key pillars, physical and emotional health, community/ support networks and creativity. It can be hard to find motivation, but the results that come from taking back control of your destiny and start choosing rather than accepting your way forward are noticeable and with consistency will begin to compound and become increasingly effective. For myself, I started small with just a few basic strategies…
- Giving my mind a break
- Looking outside of myself and finding some purpose
- Being with people and sharing openly
About the author: This post was written by Christopher Wright. After being diagnosed with MS Christopher is now on a mission is to share information and resources that help people living with autoimmune conditions lead healthier, happier lives. Connect with him on IG: @mymshealth
If you have a work-related story or experience that you would like to share to help others, then please get in touch.