UK Disability History Month (DHM) takes place from November 14 to December 20, 2024, focusing on the theme “Disability, Livelihood, and Employment.” This month aims to:
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- Raise awareness and support people with disabilities
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- Challenge stereotypes
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- Promote inclusivity
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- Advocate for equal rights
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- Showcase the contributions of disabled people
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- Deepen understanding of inclusion
Could you introduce yourself and share a little about your background? I’m Emily Ford (Reynolds), a 34-year-old mechanical engineer. I’ve been working in the nuclear industry since 2011 when I completed a placement year as part of my BEng (Hons) in Mechanical Engineering. Over the years, I’ve worked in Generation, Magnox decommissioning, and AGR decommissioning. I was initially drawn to nuclear generation because I wanted to contribute to a vital community service. Now, I choose to work in decommissioning, as I believe it’s our duty to address the nuclear legacy and ensure a safe future for the British public.Can you describe your hidden disability and when you were diagnosed? Like many people with Ehlers-Danlos Syndrome (EDS), diagnosis takes decades. I first found out I was hypermobile in 2005 when I tore my ACL during a skiing accident. Back then being hypermobile just meant being bendy. I continued to suffer with my knee and after 3 surgeries was diagnosed with osteoarthritis in 2021. Meanwhile I started to suffer with my mental health, finally acknowledging in 2019 that I have high functioning anxiety. In 2022 I was diagnosed with diverticular disease after ending up in hospital with an infection in my colon, later in 2023 I was admitted again with suspected sepsis. It wasn’t until this year (2024) when I started to suffer with symptoms of Autonomic Dysfunction, pain and fatigue that I sought specialist help and was diagnosed with Hypermobile EDS (hEDS). Finally I had an explanation of 2 decades worth of injuries, pain, and other uncomfortable and embarrassing symptoms. What are some of the challenges you’ve faced, both personally and professionally, due to your disability? Professionally, navigating workplace accessibility has been a significant challenge. Since I began using a walking stick, uncertainty around required paperwork to access certain areas has been frustrating. While I can climb stairs, it often causes concern among colleagues. Better education on processes and accommodations has helped improve this. On a personal level, my health changes have impacted relationships. Some friends and family have assumed I can no longer participate in activities, leading to fewer invitations. My message to them is simple: let me decide what I can or can’t do and help me adapt when needed. What support or accommodations have been most helpful to you? Having a flexible 4 day working week has been really helpful when I suffer with a flare up. It has allowed me to take a rest day and swap around my working day with minimal business disruption without having to book the day off sick.
Is there a common misconception about your disability that you’d like to address?
Several misconceptions stand out:
“Only old people get arthritis.” Arthritis can affect anyone, often linked to injuries or conditions like EDS – NHS UK.
“You just need more sleep.” Fatigue from Chronic Fatigue Syndrome doesn’t improve with rest – NHS UK.
“You don’t look like you’re in pain.” Pain is invisible; outward appearances don’t reflect internal struggles – NHS UK.
“Losing weight will fix everything.” While maintaining a healthy weight helps manage symptoms, it won’t “cure” a genetic condition like EDS. EDS symptoms such as pain and fatigue along with autonomic dysfunction make exercising and keeping fit extremely difficult – The Ehlers-Danlos Society.
How has your journey shaped who you are today? Are there aspects of your experience you’re particularly proud of?
My experiences have made me more compassionate, which has translated into becoming a better leader. I’m proud of how I’ve embraced these challenges and used them to grow personally and professionally.
‘Those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected’. No two Zebras have the same stripes, and EDS presents itself differently in every person. Please don’t assume what I’m capable of. Let me decide what I can do or what adaptations I might need.
Emily Ford
Resources – read more on EDS
https://www.ehlers-danlos.com/wp-content/uploads/2019/01/WhyTheZebra.pdf
https://www.hypermobility.org/what-is-hypermobility
