Before Long COVID many people were unaware of post-viral illnesses; I was too until I became ill a few years ago. I was diagnosed with ME/CFS (Myalgic encephalomyelitis), or chronic fatigue syndrome, a condition characterised by widespread pain, immune and nervous system dysfunction, and a whole host of other symptoms on top of bone-crushing fatigue. Unfortunately, this particular diagnosis is a bit of a dead-end: currently there are no treatments offered (in the UK at least) and, instead, patients with ME/CFS are told to pace ourselves and rest. Like many chronic illnesses, ME/CFS changes over time. When I first became ill, I felt the symptoms constantly, but over time with rest and pacing some symptoms have disappeared, and many only return during a flare-up, often called a “crash”. Whilst I am fatigued every day, and get brain fog often, the other symptoms wax and wane depending on my activity levels.
It’s very hard to describe the feeling of a “crash” to others: it’s the result of overdoing it when you have ME/CFS. The hallmark symptom is PEM (post-exertional malaise), meaning that you suffer an increase in symptoms following an activity. The real kicker is that PEM doesn’t occur for hours/days after the event, so sometimes you just don’t see it coming. I used to describe a crash as feeling like you’re extremely jetlagged, that exhausted but jittery feeling (tired but wired)… but since the rollout of COVID vaccines, I think this is a better comparison: it’s those “flu” symptoms you had, the fatigue, the heaviness/weakness in your arms and legs, and pain, but instead of them lasting a few hours, they last for days or weeks and return whenever you overdo it. This is by no means an exhaustive list of symptoms, but there’s no room here for that!
Symptoms vary greatly over time and between patients: there are the “mild”, “moderate”, “severe” and “very severe” subgroups of patients. I am in the “mild” category, but whilst I am able to work part-time, I often have to give up social time/weekends etc to recover from the work week. Many patients with ME/CFS are housebound, some are bedbound. The only way to try to control this illness is to “pace”, meaning carefully managing activity levels, calculating the energetic “cost” of every activity and deciding whether it’s worth the cost. Many of us use smart watches and other devices to help with pacing by monitoring the effect of activities and try to avoid the dreaded PEM. Personally, I monitor my sleep quality with an app and watch my HR carefully. If it goes above 110 (during PEM this can be from standing up), then I have to stop what I’m doing, but this can be practically difficult if I’m working. I eat carefully and regularly, drink lots of fluids and manage my caffeine intake. I manage the near-constant pain with heat and painkillers. I also have some wacky devices I’ve collected over the years (most of them don’t work, but I’ll try anything!) The hardest thing is the fluctuation in tolerances and symptoms; just because I could do that thing last week doesn’t mean I can this week (making planning very difficult). The only constant is that if I continue to over-exert myself during a crash then it will last longer and be more severe. At my worst, I have spent weeks in bed, unable to work at all, and at my best, I’ve been able to work, socialise and exercise (but not since COVID).
There is also an added energetic cost of keeping up with the research on this illness. When you have an illness that has been so poorly studied and is as stigmatised as ME/CFS it’s important to stay informed as you may have to guide your physician to treat you properly (if at all). In the UK there are very few specialists that know how to treat ME/CFS patients, and finding one is like finding a needle in a haystack. Once you have had all the standard (but limited) blood tests from the GP and they all come back “normal” there is nowhere for us to go in the system. There have been decades of missed opportunities for the study of this illness, having been passed off as “yuppy flu” or “psychosomatic”, despite countless studies showing evidence to the contrary. However, my hope is that with the recent interest in Long COVID (at least one subset of patients has clear parallels with ME/CFS) that we will finally see the development of better diagnostic tools and treatments for patients. There are a handful of labs that have made significant progress in identifying the underlying mechanism for this illness, which is necessary before developing effective treatments, but it’s been a long road as they are often chronically underfunded and also face stigma within the scientific community.
If you’re interested in learning more about ME/CFS and its tangled history then I highly recommend watching this video: The Tangled Story of ME/CFS – Dialogues (dialogues-mecfs.co.uk)
So that’s a snapshot of ME/CFS, but what’s it like doing a PhD with this illness? Well, doing a PhD with an invisible and chronic illness is tough!
Many aspects of a PhD are in direct conflict with managing an illness like ME/CFS: to avoid a crash I have to avoid “triggers”, such as lack of sleep, poor nutrition, emotional and physical stress…all of which are fairly common when doing a PhD. As an invisible illness, people often don’t realise how ill I feel. I look fine. I could be in a meeting and you might have no idea that I’m crashing, that every nerve ending is screaming at me that I should be in bed. Working from home makes this a lot more manageable, but as the world has tried to “get back to normal”, I’ve had to work outside of my home a little this term and those days have wrecked me. I do my work and then collapse in a heap for the rest of the day at home and have to stay in bed the next day to rest too. Leaving the house is utterly exhausting. We PhD students often work to tight deadlines, which leads to us not taking care of ourselves. I am a part-time student, which slows down the impending deadlines and reduces tuition costs, lightening the load. I still struggle to keep up, but I try not to feel guilty about that. If I have to take a few days off, I forgive myself. I’ve worked from home for most of my PhD, allowing me to rest and pace myself, eat well, and avoid the stresses/energy draining of commuting, socialising in the office etc. (I enjoy chatting as much as the next person, but sometimes it’s exhausting!) Still, sometimes avoiding the stressors is impossible. If I know that I have a major deadline coming up, knowing I will crash after, I plan for it. If I can rest before (not likely if it’s before a deadline though), then I do. I then block out days after the event to allow time to rest; I ensure I have a full freezer just in case I don’t have the energy to cook for a few days.
I often work from bed as it reduces the stress on my body during a crash. When I’m crashing I have learned to ignore anything non-essential; this includes cleaning and social occasions (I am very unreliable, thankfully I have very understanding friends). So, I often spend my days alone in a messy flat…another thing for which I’ve had to learn to forgive myself. The energetic cost of cleaning on a bad day is simply not worth it. I prioritise work over all things (I still have to pay the rent no matter how rough I feel), and if I’m doing well, I can have a clean flat and see people too! Since COVID, I keep my social bubble small anyway: since a cold can put me in bed for days, I really don’t need to catch COVID!
Becoming chronically ill has certainly taught me a lot. I am more patient and forgiving of myself (and others) now. But it is a constant battle between the person I used to be (hiking, socialising, working all the time), and the new me (resting and pacing my way through life, barely keeping up with work and missing out on “normal” things). However, I know that I must be disciplined with this illness if I have any chance at recovery. I have been able to function more normally with ME/CFS in the past, but that was before COVID. So, I need to rest myself well to get back to being more “me”. It is a constant mental and physical challenge to rest and pace. Sometimes I do it well, but often I don’t. The hardest part is the constant stopping and starting. As soon as I get the balance right and start to make real progress with my health and PhD, something comes up, and I crash. After a forced time off, it feels like I have to start all over again, which is very frustrating…but it’s just become part of my own PhD journey.
Manchester Met’s Graduate School are very grateful to the anonymous contributor who has provided this account of their PGR experience to mark UK Disability History Month 2021. Now in its twelfth year, the month of activities has particularly focused on the theme of Disability and Hidden Impairments in 2021. You can find out more by following these links and we welcome any feedback or shared experiences from readers.