Blog: Working with the invisible - Gemma’s experience of hidden disability 12 May 2026 Gemma Chandler Director of Complex Needs and Sponsor for the UCAN diversity network Most people I work with don’t know I have a disability. That’s the reality of many long-term health conditions, they don’t announce themselves. You can’t see it, and there’s no clear point where you can stop and explain. I live and work with fibromyalgia, a condition that affects pain, energy, and concentration, and comes with one particularly difficult feature: unpredictability. That unpredictability shapes more than people realise. One of the hardest parts of having a hidden disability is that you are constantly managing something in the background while trying to show up and do your job well. Some days, that’s fine. Other days, it isn’t. There are times when I go into meetings already exhausted, not just tired, but the kind of fatigue that doesn’t go away with sleep. Times when my whole body aches. Times when concentrating feels difficult, or when even sitting or standing for too long becomes uncomfortable. From the outside, that can look like tiredness, distraction, disinterest, or just a bad day. From the inside, it’s managing pain, fatigue and cognitive fog all at once, and still trying to perform at a high level. Fibromyalgia doesn’t follow a pattern. There’s no reliable warning. Flare-ups can come out of nowhere and last days, weeks, or longer. So, a lot of the time, I’m adapting as I go and pushing through more than people realise. "When something isn’t fully believed or understood, it can be too easily dismissed." I have, at times, felt embarrassed by my condition. I’ve found it hard to explain, partly because it’s complex, but also because also because explaining can be exhausting. There’s also the stigma. Fibromyalgia isn’t always well understood, and I’m aware that some people don’t fully accept it as a real condition. When something isn’t fully believed or understood, it can be too easily dismissed. And when your symptoms aren’t visible, there’s always that underlying worry that people might assume you’re exaggerating, being difficult, or not coping very well. I’ve definitely had moments where I’ve wondered whether people might think I’m not capable of doing a demanding job. Work has always been important to me. It’s a big part of who I am. Living with a condition like this means doing a lot of invisible preparation. I often think of it as needing a bit of a “run-up” to life. Resting before something important, managing energy carefully, and then recovering afterwards. I also have neutropenia, which means I pick up infections more easily. In practice, it all overlaps. One thing can trigger another, and it’s not always clear where one condition ends and the other begins. "UCAN exists to support a consistent organisational approach to engaging and supporting staff and service users with protected characteristics." Outside of work, life doesn’t exactly slow down. I live in a tiny village surrounded by fields and woods with two very loud and busy sons, a partner (all of whom play the drums) and my cats and chickens. So “rest and recover” is sometimes less of a plan and more of a vague ambition. It’s a constant balance between what I want to do, what I need to do, and what my body will allow. And sometimes, despite all the planning, my body has the final say, which is frustrating. I’m sharing this as member of Hestia’s Disability Inclusion network UCAN (Unique, Capable and Notable). UCAN exists to support a consistent organisational approach to engaging and supporting staff and service users with protected characteristics. It’s a space to share experiences, influence change, and support each other, and allies are very welcome. We support people every day who are managing complex health conditions, including fibromyalgia and other chronic illnesses. Having a disability doesn’t mean you can’t do your job well or progress. I’m in a senior role, and I’m doing it while managing a condition that can be painful, exhausting and unpredictable. One thing I’ve learned is that the right support makes a real difference. That doesn’t always mean big changes. Often, it’s about understanding, flexibility, and having the right conversations at the right time. "Support like this isn’t about lowering expectations. It’s about making it possible for people to meet them." I’m very lucky to have a brilliant support network around me, especially my fellow Operational Directors, who bring a mix of support, humour and reality checks. There are things in place that can help more broadly too, including: Occupational Health referrals to explore what support might work Reasonable adjustments, whether that’s flexibility, equipment, or ways of working Access to Work for practical and financial support Managers who are open, listen, and are willing to work things through Support like this isn’t about lowering expectations. It’s about making it possible for people to meet them. "I am capable. I am committed and I am not defined by disability." If you are living with a disability, visible or not, you’re not alone. It can feel like you have to work harder to prove yourself, keep things to yourself or that you don’t quite fit but there isn’t one version of what a “good” employee or leader looks like. People with disabilities are working at every level of organisations, including senior leadership. You don’t have to have it all figured out. You just need to find what works for you (and accept that some days will still be harder than others). If you’re someone who doesn’t have a disability, just being open and understanding goes a long way (you don’t need to become an expert overnight). I’m still learning how to manage my condition. There are still difficult days. But I also know this: I am capable. I am committed and I am not defined by disability. Manage Cookie Preferences