7 Ways I Manage My Chronic Illnesses While Working Full-Time

I’ve lived with a variety of chronic illnesses throughout much of my teenage and adult life, but it’s only been the past few years that I’ve really considered myself as having a chronic illness. I’ve recently started a new job, which I absolutely love to pieces, but in the past few months I’ve had to seriously consider how I balance working full-time, while dealing with every aspect of my ever-changing health.

I currently work in a students’ union at a university in the United Kingdom and I’m extremely lucky that I work with a very supportive and understanding small team. With this in mind, these are some things that I’ve found especially helpful in managing my health in a busy work place.

1. Sharing is caring. Throughout my time at college and university, I didn’t disclose many of my health problems, and as a result I had a really rough time as a student. When I started working, I promised myself I would share more, in the hope that I’d be better supported by my colleagues. Thankfully this has absolutely been the case.

In the first few weeks I sent round an essay-length email to most of the staff I work closely with, including managers. I partly explained how my health was likely to affect my work, but mostly just things to be aware of – such as the fact that I have seizures. This email took me about seven drafts to write and my heart skipped a few beats upon pressing the send button, but I’m so glad I did.

I was overwhelmed with the replies I got, both via email and in person. A few of the replies I got via email definitely made me cry a little with the support I got from people I barely knew. I’m now in the great position where if something happens that means I need to go home early, I don’t feel like I have to explain myself. The level of understanding amongst my colleagues definitely puts my mind at rest, and I now question why I never did it before!

2. Knowing boundaries. I am a self-confessed workaholic, for two main reasons. Firstly, I love my job. I genuinely look forward to getting up every morning and if I could work seven days a week, I probably would. Secondly, it’s a coping mechanism. I’ve spent several years trying to deal with my mental health, largely surrounding my physical health, and by throwing myself into my work I can attempt to forget about the things I’d rather not think about.

Unfortunately, I have a tendency to forget that I’m definitely not as well as I think I am, and working several consecutive long days is likely to aggravate my health issues. I’m still getting to know my boundaries, and when I need to take time for myself, but I’m getting there. I know that once I begin to have those seizure warning signs, or when my knees start going, I’m already past the point of doing too much.

As I’ve come to this realization, I’ve started to ask certain people to make sure I’m not working too much. These people have a pretty good understanding of when I need to absorb myself in work for my own sanity, and when they need to be pretty stern in telling me that that paperwork can wait until tomorrow, and nobody is going to die in the meantime. Having these few trusted friends who know my boundaries, and probably recognize them earlier than I do, is definitely an invaluable tool!

3. Code words. I personally find it quite difficult to admit out loud that I’m not OK. I have a tendency to say I’m fine when I am anything but, and regularly bury myself in work in an attempt to convincingly pretend I’m fine. I suppose the main reason for this comes from the same reason I’ve never declared my health problems before now: being treated differently, and somehow possibly less capable. One of my code words (or rather, pictures), is that on the days I am less than OK, I draw a little star on the corner of the whiteboard which sits above my desk. This is a non-verbal sign for the people that I work with that I’m feeling a little delicate today.

My other code word is something that came a bit out of the blue in the pub, but my CEO and I now have something we like to call “lies fine.” In other words, I’m not fine, but treat me like I am unless I give you any indication otherwise. It means that I don’t have to necessarily admit that I’m not OK outrightly, especially if that’s in front of other people who maybe don’t need to know why I’m “lies fine.” It means I’m not questioned if I leave work a little early, or if I take a longer break to go and sit in a quiet room away from the noise of the office. This system has given me that chance to say I’m not OK in a joking way, and I don’t feel like I’m being too much of a snowflake, which is something I hate.

4. Having flexitime. I appreciate I’m in a very lucky position to have this, but it is undoubtedly one on the few things that gets me from one week to the next. I work a 36.5 hour week, with core hours from 10 a.m. to 4 p.m., but how I work the rest of those hours is pretty flexible. I also have a pretty high level of control over my calendar, which means I can schedule most meetings when I know my pain levels are likely to be lower, and can avoid things that require high levels of concentration on days that I know are less than ideal for me to sit in a three hour meeting. For me this is Thursday afternoons after about 1 p.m., and Fridays before midday, due to weekly treatment. I also use my flexitime to leave work on a Thursday between 3 p.m. and 4 p.m., which means I don’t have to worry about my pain levels sky rocketing while I’m still at work.

5. Don’t be afraid of being seen as “boring.” Working in a university town means the culture of drinking is still very much alive and thriving. Due to my treatment and just generally not having the energy to do so, I rarely drink, even when friends of mine are just going out for one pint. I’m lucky that I am mostly surrounded by friends who completely understand and don’t even comment when I buy a lemonade, instead of a pint. It’s taken me a while but I’ve come to accept that in order to get in that much needed social time, the alcohol usually takes a back seat. That being said, I’ve never been a big drinker anyway, and most of the time I will happily take a lemonade or a coke over a pint.

Having that brief period of socialization to keep me balanced is more important than including alcohol in that, which will likely knock me off course for a day or two. Unfortunately it also means I’m rarely invited out anymore, as I am seen as “the boring one who goes home early and doesn’t drink,” but for the sake of my health, it’s definitely worth it. I’ve come to accept that the people who are most important to me invite me out regardless and don’t mind when I leave early.

6. Slow cookers: the best thing since sliced bread. I’ve only owned a slow cooker for about two months, but I honestly question how I’ve ever lived without it before now. A very good friend of mine was kind enough to surprise me with one a few weeks after I started my new job, and it’s one of the best things I’ve ever owned.

As I get to Thursdays and Fridays, when treatment side effects take hold, along with general week fatigue, being able to get home from work and have a hot meal ready to eat really makes my life so much easier, and is one less thing to worry about as my pain levels climb throughout the evening. These are a fantastic investment and can be bought at a low cost. I often spend 15 minutes in the evening chopping vegetables, before throwing it all in the slow cooker with some chicken and some form of sauce before I go to work, and I come back to a cooked meal, which will often last me two to three days worth of meals.

7. My private pharmacy. I have a lockable drawer in my desk in which I keep a small selection of my larger home pharmacy, just in case something unexpected flares up at work. This includes: a smaller packet of almost every medication I take, gloves for when my neuropathy flares up, and flip flops for the same reason when socks and shoes are too painful to wear, but being bare foot isn’t exactly professional. Both heat pads and ice packs. A Microbead Cushion for when my back needs more support and a blanket for when I’m particularly sensitive to the cold. Knee and ankle supports for when my arthritis kicks off, and a permanent supply of biscuits for when I have a sudden crash, or if I have to take medication with food. A lot of these things are quite minor, but they all get me through the day when I have an unexpected flare.

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