How Keeping a Diary Helps Me Manage My Chronic Illness

I recently rediscovered the diaries I wrote back in the ’90s, full of the usual teenage ramblings about which boys I liked, why Blur were better than Oasis and how my friends and I were spending our weekends – which were usually spent ice-skating or hanging around the local park. Reading through, some elements made me laugh out loud, some surprised me and others were positively cringe worthy. At the time, jotting my thoughts down at the end of each day was evidently therapeutic to my younger self and I still firmly believe that keeping a diary can serve a useful purpose, particularly for those of us with a chronic illness.

I resumed my diary writing at the start of 2017, a year after becoming ill and three months after being diagnosed with chronic fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME). At first, it was simply a way to note down which supplements I’d taken each day and to record the type and severity of symptoms I was experiencing. It then developed naturally to include a brief summary of whatever activity (mental or physical) I had undertaken that day, in order to enable me to identify any triggers to subsequent exacerbation of my symptoms. At times I also listed which foods I had eaten, again looking for patterns – although I have since moved onto recording this, and other information, on my Fitbit.

Eventually, I moved away from the list style reporting (if for no other reason than it didn’t make very exciting reading) and changed to writing in prose. I still include comments about how I am feeling and what level of activity I’ve been able to undertake each day, but these are now infused with details about my children, family or friends. I give brief critiques of books I’ve read or films I’ve watched. I write about my hopes for the future and the actions I intend to take to avoid relapse. Importantly, I also include warnings, usually written in bold capitals at the top of the relevant page. For example, when I recently had a set back and ended up bed-bound, I highlighted the page as a reminder that, despite my best intentions, my body evidently still isn’t ready to return to work just yet. I also use my diary to celebrate the good days – those rare occasions where I actually feel like I’ve got some energy, albeit a very small dose.

My diary serves as an important piece of evidence on the days where I feel like I’m not making any progress. A quick flick back through the pages shows that, although the improvement in my symptoms might be small, the improvement is nonetheless there. When someone has lived with a chronic illness for some time, there is a tendency to accept the new “normal,” forgetting (or perhaps blocking out) what we were previously capable of. At times, for example, when attending occupational health meetings or similar, it is useful to have a written reminder of just how serious and varied my symptoms are, particularly if I’m having a brain fog kind of day.

Eventually, I hope to improve sufficiently to be able to return to work. Whilst I am hopeful that I will be one of the lucky ones who “recovers” from my condition (if such a thing is truly possible), I am very aware of the fact that I am likely to be affected by CFS/ME in some way for the rest of my life. When I do return to work, I will be instructing my husband to wave my diary under my nose whenever I appear to be returning to my old, ME unfriendly ways: Late nights, poor diet, insufficient rest, etc. I have no doubt that the pages documenting my untimely decline and very gradual “recovery” will be enough to halt me in my tracks.

Do you keep a diary? How has it helped you? I’d love to hear your comments.

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