AHEP Development Monthly #49 Progress: Pathways to Growth and Inclusion in HE
A Reality Check: What Living With a Chronic Condition Really Feels Like
I’m just going to point out the elephant in the room before I get started: living with a chronic condition sucks. There, I said it. Wow, that feels good to get off my chest. Yes, it well and truly sucks, and I don’t think you ever fully accept it. I know I haven’t. Almost eighteen months on, and my partner has had to completely readjust his own life to support me, so you can probably imagine what my work life has become!
Still, I’m not sure there’s a better sector than higher education to be in when something like this hits you, with its focus on inclusivity. Before I fell ill in July 2024, I was a vibrant, energetic, busy woman in my early thirties, finally living the life I’ve always wanted. I was (and still am) in a happy relationship, had just brought home an adorable golden retriever puppy, was in the gym early-doors three times a week to work on a rowing marathon, and I was about eighteen months into my new career as a Change Manager at Nottingham University. You can see why falling ill wasn’t exactly a welcome addition to my year, or to my life in general, and the ramifications of it on my career were wide-ranging and hard to swallow. It’s not all doom and gloom, though. The support I received from my colleagues at work made all the difference.
Apart from a brief six-month stint at an energy company, I’ve worked in higher education ever since I was a university student myself, and pretty much all my roles have been in professional services. I’ve worked in registration, in graduation, as a front-line guidance and signposting extraordinaire for student services, and as an editor of academic print and digital content for a distance-learning university, before moving into more process-improvement roles such as Registry and Academic Affairs Manager and then Change Manager (both at Nottingham). Sadly, I was made redundant from that last role in July 2025 and am now business-building and job-hunting, which is pretty much impossible when you’re chronically ill … but that’s another article in itself, and this one is about working in higher education with a condition like mine, so I’m going to give that side of things my full attention.
Navigating ME/CFS and Autonomic Dysfunction
First off, you should know that I love people. Really, I do. I love working with them, laughing with them, talking to them, understanding them, helping them – the whole shebang. It’s why I’ve always been drawn to professional service roles, especially the ones where I can make a difference. When I got the Change Manager job, it felt right, you know? I could feel it in my gut: this was the role I could really grow in, that I could see a career in.
Then came Myalgic Encephalitis, also known as Chronic Fatigue Syndrome, and later a diagnosis of automatic dysfunction. If you’re not aware of ME/CFS, it’s long-term, incurable, and very unpredictable. It comes with a large goody-bag of symptoms, including extreme fatigue, nausea, vomiting, body aches and chills, tinnitus, IBS symptoms, heartrate problems … I could go on, but a Google search will probably save you time and save this article its word count.
The bottom line is that no day is the same for me now. I can wake up peppier than a cheerleader, raring to go, and then in a few hours be so tired I can’t keep my eyes open. I can lead a workshop for a morning, then be horrendously ill for days and need to take the time off. Or I can be a zombie for days at a time, barely able to lift my head off the sofa, to walk, to swallow, to keep my body temperature up. It’s pretty scary.
All of this means that on a daily basis it is exhausting just trying to anticipate what my day might look like. It keeps me up at night worrying about who I might let down if I’m ill, and it can be very depressing to know that every activity I do, whether personal or professional, comes with a price. I even have to list what I need to do and decide which one I can push to another day: seeing a friend, making a meeting, reading a book. As for exercise? That’s now non-existent, my dreams of rowing that marathon no longer in reach.
To sum up so far: living with a chronic illness is life-changing, and it affects every aspect of your life. My case is considered to be mild, the bottom rung of the severity ladder, and still I struggle with work hours, with maintaining a sense of normality, so I really feel for anyone considered to be moderate or above. Most people with this condition can’t work at all. Ever. I’m hoping that never has to be me, which is why (now that I’m job-hunting and business-building), I know I need certain accommodations that just, sadly, are hard to find. What makes it more difficult is that the experience of ME/CFS is different for everyone, with no one-size-fits-all when it comes to symptoms and support.
Why Reasonable Adjustments Matter in Higher Education Roles:
When I was a Change Manager at Nottingham University, what helped were reasonable adjustments, partnered with the fantastic support I had in my line manager, my team, and my wider department. Honestly, I have great gratitude for the environment senior leadership created in that department – it can make the world of difference to anyone living with a disability, chronic illness or long-term health condition. I compare it to others I know who work in private companies, and it’s terrifying how rigid that side of the professional world can be. So, believe me when I say that the higher education industry is one of the most supportive environments I could have hoped to work in. And yes, I do miss it.
But how did they help exactly? Like I said, the supportive environment and the reasonable adjustments helped me to maintain my sanity and perform my job as best as I could. Reducing my week to four and a half days was a wise decision, as that Wednesday afternoon off meant I could recharge enough for the next day. Working from home, however, was my saving grace. In this day and age, we’re forgetting the few benefits of the pandemic, and now hybrid, even full time, in the office is once again the norm, pushing out people like me who only need the adjustment of home-working to continue with their careers and earning their own income.
The main impact of my condition on my role, which I discovered early on, was that I could no longer facilitate workshops (the main task I loved before getting sick), but I could help the team with their goals in other ways. I designed the department’s Engagement Strategy, redesigned the team’s SharePoint site, helped out on smaller ad-hoc projects, gave advice rather than led workshops. I was also able to forgo non-necessary meetings, both online and in-person, and reserve parking spaces close to buildings I had to be in, so that I didn’t need to walk too far.
My line manager and I worked very hard to reshape my role into one that still did what needed doing but took care of my health first; it was hard, I won’t lie, but we were getting there. Sometimes, all it takes is an open conversation, sharing knowledge about the condition, and problem-solving as best you can. As Change Managers, we had a slight advantage in managing unexpected impacts, of course!
Living with a chronic illness can be, and very much is, devastating. It alters everything about you. But having your employer take the time to understand, to support, to accommodate? It gives you back some of the independence the condition takes from you. Most people with such illnesses might not look like they’re sick at all, but that’s because the world only sees the tip of the iceberg. The happy part. The seemingly healthy part. The part the individual wants you to see. But underneath that mask, they’re probably suffering, in pain, sick, exhausted, depressed, anxious, aching, shivering – the list goes on.
Why HE Can Be a Supportive Environment for Disabled Staff:
I never minded telling colleagues about my condition, but not everyone feels comfortable doing that. It’s why working at a university was such a wholesome place. People might have asked, but they never pried. They never judged. They simply… helped.
I know the financial landscape for the sector is not in a good place right now, and part of me will always wish to be working for a university, but it’s not all bad. It’s the people that make it worthwhile, and I will forever be grateful to those who supported me during one of the most difficult traumas of my life. It really made the difference I needed, helped me remain independent, and restored some of the confidence I had lost, so thank you to my old team.
Living with a chronic illness isn’t easy, but with a culture at work that focuses on understanding and flexibility, it can transform your life and turn limitations into strengths.
If you’d like to learn more about chronic fatigue syndrome, you can visit the ME Association website – another crucial line of support that has helped me tremendously.
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