Gemma

Gemma, a solutions manager at bp, lives with Ehlers‑Danlos syndrome (EDS) – a complex genetic condition that affects connective tissue throughout the body. People with EDS can experience a wide range of challenges, including joint instability, skin fragility and issues affecting the eyes, teeth, and many systems in the body including gastric and nervous systems. The condition influences everyday life, from managing pain and fatigue to navigating work, mobility and routines in ways that vary from person to person.

How long have you been with bp and what do you do?

I started working at bp in 2012 and, over the years, I’ve focused on HR data and HR technology systems. Now, I’m a solutions manager, specialising in designing core HR data and tackling complex data management design.

What is EDS and how does it impact you?

EDS is a complicated genetic condition that affects connective tissue, which is found throughout the body. This means people with EDS can face all sorts of challenges, often with their joints, skin, eyes, teeth and other systems. For me, EDS mostly affects my musculoskeletal and autonomic systems, so I face difficulties like not being able to walk unaided and struggling to regulate my body temperature.

You lived with complex musculoskeletal issues, including hip dysplasia and significant mobility challenges, long before being diagnosed with EDS. What has that journey been like for you?

It’s been a complicated journey. When I was younger, I often felt I had to hide or downplay my health issues, worried I’d be treated differently. For most of the time, my disability was invisible, and I was able to participate in activities like ballet and acrobatics. It confused people when I sometimes needed crutches but could walk in heels the next week. In 2022, my health suddenly worsened, and I became a permanent crutches user, which led to my EDS diagnosis.

How did receiving an EDS diagnosis later in life change the way you understood what your body had been coping with for so long?

Getting an EDS diagnosis made a huge difference. My friends and colleagues knew I had mobility and health issues, but it was always hard to explain why I had so many challenges, or why something would be easy one day but impossible the next. Understanding EDS helped me accept my disability and embrace it.

Now, I advocate for accessibility, both as a member of the accessibility BRG at work and by influencing others to consider accessibility in their technology and communications. Outside of work, I am also an active member of my local EDS support group.

How do you balance the physical demands of daily life – including pain, fatigue or mobility challenges – with the responsibilities of your role?

I’ve learned to be realistic about what I can achieve each day and use pacing techniques to manage fatigue. Work can be demanding, with tasks coming from different directions needing my expertise and focus. Previously, I worked long hours during critical periods but I’ve adapted my approach to meet these demands while respecting my physical limits. I always make time at weekends for some jobs in the garden, too.

How has bp supported you in managing your health while continuing to grow in your career?

At bp, I’ve been surrounded by fantastic people – from line managers to peers and other colleagues I’ve worked with on projects. Being open about my disability has helped me bring my whole self to work. My managers see me for my skills and knowledge, not my disability. They’ve always encouraged me to explore new opportunities, which has led to promotions and becoming a line manager.

Are there adjustments, routines or boundaries that help you manage your health at work?

Open conversations with my manager, support from occupational health and HR have allowed us to find ways to support me at work. These adjustments have changed as my condition has evolved, and it’s important to keep discussing and reviewing what support might be needed as things change.

What advice would you give to someone who has a disability – visible or not – about speaking up for the support they need during recruitment or once in role?

Speak up and feel confident asking for what will help you manage your condition, whether that’s during an interview or once you’re in the workplace. Find the words you’re comfortable using to explain your condition and how it affects you.

Tell us about a personal strength you have developed as a result of your disability. How has your condition helped you in your career?

 I’ve developed three big strengths: adaptability, risk mitigation and empathy.

1. Adaptability – I often need to find new physically adaptive ways to do things that others might find easy, and I use the same creative thinking to solve problems at work.
2. Risk mitigation – I constantly consider potential challenges and how to overcome them, which is a skill I use all the time in work projects.
3. Empathy – recognising that everyone has different backgrounds and struggles, especially with mostly invisible conditions, has made me a better manager and colleague. It’s important to remember that we don’t always know what’s happening in other people’s lives.