The reality of invisible disability and the power of support
Guest blog by Jane, an aFLAME Disability Network member.
I never imagined how quickly life could change. What began in mid-2024 as a mild ache in my shoulder gradually reshaped my routine, my expectations, and even my sense of self. Over the past year, I have navigated diagnosis, treatment, setbacks, and small but meaningful victories. I have learned how isolating chronic pain can be—but also how powerful support, creativity, and resilience can be.
In the early months, the pain was manageable. I relied on painkillers and pushed through. But by late September, everything escalated. My physiotherapist described it as a “storm” of injuries. Still, I reassured myself it would be gone by Christmas.
It was not.
Daily life became exhausting. Simple things—getting dressed, brushing my teeth, making a cup of tea—were painful. Nights were restless, and the effort of coping left little room for anything else. The world outside began to feel distant.
I sought help where I could: medication for nerve pain, a borrowed TENS machine, and eventually an MRI. Receiving the results just before Christmas was a shock—there were multiple issues, and I realised this was not going to go away.
The start of 2025 brought stronger medication, exercises, and eventually a steroid injection, which I had been hesitant about. It was difficult, but it helped make the pain more manageable.
In May, my physio suggested using a left-handed mouse. With support from the Assistive Technology team, I was able to try different options and find one that worked—something that has made a real difference to how I work. There are still things I find difficult, and some days are harder than others. However, I am now better equipped with the tools, adjustments, and self-awareness to manage my work in ways I didn’t have before.
Later that summer, I felt overwhelmed, as though I was beginning to accept this as something long-term—a new version of myself. Around that time, I found aFlame, a university staff and PGR disability support group. From my first meeting, I found warmth, understanding, and connection. For the first time in a while, I felt less alone.
Pain is isolating—there is no mistaking that—which is why support matters.
I paused physiotherapy for a time and allowed myself space to simply be. I started drawing again, reconnecting with creativity I had lost. Gradually, I reintroduced light weights—lifting a tin of beans, then a bottle of ketchup, then a container of salt. Those small milestones mattered more than I ever expected.
There were setbacks. Just as progress felt possible, I injured my elbow lifting a heavy saucepan. It was frustrating, but I was beginning to understand that progress is not linear.
As of June 2026, I am in a better place. I still experience pain, and there are ongoing challenges, but I have more tools to cope. Physiotherapy continues, and a talking therapy group has helped me build resilience in new ways. I am learning to appreciate the moments when pain does not dominate, and to redefine what “normal” means.
This is not the life I expected—but it is one I am learning to live, in my own way.
If any part of this resonates with you, know that support is out there. No one should have to face chronic pain alone. I am deeply grateful to my family, friends, the members of aFlame, the Assistive Technology team, work colleagues and my physiotherapist, Simon, who have supported me along the way.
Thank you for reading.
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