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Amore has worked at NPL for five years, they are a scientist who developed a hidden disability three years ago. Their long-term condition has a range of impacts in the workplace. It can fluctuate and cause fatigue and chronic pain, which is often not visible to others. This condition can make it hard for Amore to stand for long periods of time, walk long distances to meetings and to move equipment around in the lab. It can also, at times, affect their ability to concentrate. This not only impacts their work and completion of tasks but also their interactions with colleagues. Amore has shared that they have a disability with their line manager and local team, but colleagues in other teams and around the building aren’t aware of their condition. Amore has a workplace adjustment plan in place, but does still need regular review when they start a new project or new equipment comes in.

I have always wanted to be a scientist and have aspirations of where that career will take me. When I became unwell and was going through the process of diagnosis, I questioned whether I could work at all, let alone have a successful career in science. No matter how hard I tried not to, my mind raced ahead to worst case scenarios and what would happen if I couldn’t work. I couldn’t stop it.

Career progression is a worry for me, not only did I miss opportunities and new developments during the time I was off, but I worry about new opportunities in the future. While everyone who knows is very good and supportive, they do sometimes make assumptions about my capabilities and assume that I can’t do things. Sometimes they are right, but it would still be nice to be part of the conversation and feel like I have a voice.

I think the biggest barriers for me is that my conditions fluctuates; so sometimes I’m fine, other times it’s really bad, but for me it’s the in-between that’s hardest to manage. I’m ok enough to work but not always 100%. Sometimes my productivity can be low as I’m fatigued, or I can struggle to concentrate because of the pain, medication, or my inability to sleep. Learning to understand my limits has also been hard. It took me a long time to accept and come round to the idea that I now must work differently, I can’t rely on the strategies I used to and have only found what works for me through trial and error.

I worry a lot about what other people’s perceptions of me are. My disability is hidden, even when I’m struggling it doesn’t always show outwardly. For those who don’t know about my condition in other teams, I imagine at times I appear disorganised and a bit flaky, and sometimes my feedback does reflect that. It's hard because I’m sure people would be understanding if I told them, but I also don’t want everyone to know something that is so personal about me.

It doesn’t feel like there are lots of people with disabilities at NPL, but the community group is growing, so there are, I think, lots of people like me who share with only a few. From what I have heard, I think different people have different experiences, for me I was lucky that I returned to work it was not long after a new policy and procedure launched, so awareness was high, and my line manager has been great in using those resources to support me.

It can be hard to share and ask for what you need, because it’s your life and it’s not a conversation you want to have with everyone. A workplace adjustment plan really helped me structure the conversation and communicate impacts to my line manager and, as I take on new things, we add to it. I would say that NPL is on a journey with reasonable adjustments, while much improved, it can sometimes be challenging in terms of the time it takes to get things approved and implemented.

Developing a disability at any stage of life can be a challenging time and can happen to anyone. Both inside and outside of work, you don’t always understand what you might need, let alone how to ask for it at work. My advice would be to find people that you trust and feel comfortable with to help you build up your confidence to ask for the things that you need. Make sure you understand your rights and advocate for yourself. Many of us are hesitant to ask for the things that we need for fear of the response that we will get.

Be prepared to be asked what you need and know that its ok not to have an answer. At first, I didn’t know what I needed beyond flexibility in my hours and understanding that I might be unexpectedly off, but as I have come to understand my long-term condition and how it fluctuates, I have learnt that there are more subtle things that make a difference to me every day. I found NPL’s tailored workplace adjustment plans helpful in supporting me think things through what I might need beyond the obvious.

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