Experiencing Ehlers-Danlos syndrome at work
We're proud to share a message written by Rachel, a member of our very own Disability and Carers Network. At EDF, our employee networks are integral to our inclusive culture, they are open to all and support our people whilst advocating for positive change.
I have Ehlers-Danlos syndrome (EDS). My body has a genetic defect which affects the way that it produces collagen; this affects my connective tissues and therefore most parts of my body. EDS is not a well-known condition and it is often missed in diagnosis. As a child I was just assumed to be a ‘weedy’ kid who was no good at sport and couldn’t run very well. The truth was, due to my weak tendons and ligaments, my body was working extra hard to keep my joints in place.
I frequently injured myself from sprains to a spectacular elbow snap in a failed attempt to join the schools gymnastics club at age 11! I was diagnosed in my 30s after becoming very unwell in pregnancy. Hormones during pregnancy cause connective tissues to loosen up even further. By the point I was diagnosed, I had difficulty walking as my hip or kneecap would start to dislocate as I tried to walk and life was incredibly painful as a result. Connective tissue isn’t just limited to joints however and I also had problems with my eyes when tissues became fragile in them as well.
My EDS diagnosis journey
By the time I was diagnosed, I had almost lost my son during pregnancy due to complications associated with EDS which put me in hospital. I had an emergency referral to a Rheumatologist after previously seeing one several times about long term joint pain without a diagnosis beyond a vitamin D deficiency. At the time, I was in my mid-thirties and had worked for EDF for several years. I deteriorated a lot during pregnancy and there came a point when the company very kindly suggested that it would be a good idea to work part time and wind down to maternity leave early. I had a lot of support from the company at this time.
After pregnancy, I went through a lot of physiotherapy and hard work to get to a point where I could walk, at first with aids and after a couple of years, finally without an aid. By that time, I had some major surgery due to my condition and discovered that, due to the wear and tear of joints, I have Osteoarthritis in my lower spine and my neck, along with degenerative disk disease. I am currently trying to delay fusion surgery in my spine for as long as possible.
EDF has been very supportive throughout my journey
I have had support through occupational health and the ability to use the benefits scheme has meant that I can access Osteopathic treatment as well - this has been invaluable in my rehab. My desk has been set up to support my needs – I develop tendonitis easily and modified display screen equipment reduces that risk immensely. Flexibility with my job, allowing me to work remotely on a regular basis means I am able to conserve energy and heal -this is very important when your hips, knee and ankle tendons are all inflamed and damaged. Even the ability to access gym memberships through the flex benefits package meant that from the early days of rehab I could access a pool close to work which helped to build strength day by day.
We were also able to make sensible adjustments to my approach to work. Whilst my natural environment was site based work, I was able to focus on our project office activities during the long rehab and still give value to the company. This took into account my physical ability as well as accepting my intellectual contribution. My experience has been one of a long term health condition which was undiagnosed and deteriorated to a significant degree before diagnosis. I have been incredibly lucky to have support from my employer which has enabled me to get some considerable success with rehabilitation. I have worked in different industries during my career and I am very aware that not all employers are as progressive as EDF.
The support that I have experienced has been incredibly positive and has given me the resources I needed to regain my independence. Being able to work has had an incredibly positive affect on me, it has given me a feeling of worth when coping with the emotional impact of coping with illness and it has helped me to remain intellectually engaged. That engagement is incredibly important and extends to all of us who encounter disability and those of us who have diagnoses which are not as positive as mine.
Receive articles like this
Related Roles
Salary
Location
Morecambe
Brand
EDF UK
Job Type
Site-based
Department
Nuclear Operations
Location
Morecambe
Description
Are you a problem-solving enthusiast with a passion for HR and Employee Relations? Do you love finding creative solutions that make a real difference? Our full-time HR Case Advisor role at Heysham 2 P
Reference
dd5dd66c-37de-43b5-831b-cc304fe1b42a
Expiry Date
01/01/01
Salary
Location
Gloucester
Brand
EDF UK
Job Type
Hybrid
Department
Nuclear Services
Location
Gloucester
Description
Gloucester Business Park, Gloucester - with flexibility of working from home, minimum 3 days a week in the office.This is a fixed term contract until June 2026.Are you an experienced Cyber professiona
Reference
b4e0b531-851f-4a48-9d5a-b0c7b059e150
Expiry Date
01/01/01
Salary
Location
Gloucester
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Gloucester
Description
Gloucester Business Park, Gloucester - there will be opportunities to work regularly in our offices in Bristol, Bridgwater, Cannington and at Site.Flexible and blended working arrangements are also av
Reference
dae7cc21-2200-4506-a910-3bd6f392c964
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Site-based
Department
Hinkley Point C
Location
Bridgwater
Description
Are you driven by the challenge of making complex engineering systems perform at their very best through expert commissioning? Are you excited by the idea of working alongside a wide range of discipli
Reference
ad47e252-c26f-4d0a-aba2-731f7e06e2f9
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Bridgwater
Description
Full-Time, Contractual location of Bridgwater, 3-4 days a week in office, work from home available. Are you confident in your ability to lead commercial strategies across complex, high-value contr
Reference
0fa6a91f-a2a4-4542-8a23-99775ef4de8a
Expiry Date
01/01/01
Salary
Location
London
Brand
EDF UK
Job Type
Hybrid
Department
Nuclear Operations
Location
London
Description
Governance and Assurance Lead (Cyber)Are you ready to make a significant impact on the safety and effectiveness of IT services within Nuclear Operations?As the Governance and Assurance Lead (Cyber), y
Reference
2e4cb337-6f0d-4398-ab29-41825a520333
Expiry Date
01/01/01
Salary
Location
Bristol
Brand
EDF UK
Job Type
Hybrid
Department
EPR Engineering
Location
Bristol
Description
Location: Aztec West, Bristol (hybrid working) Are you ready to power the change that will help Britain reach Net Zero? At EDF, we're on the frontline of delivering the next generation of nuclear powe
Reference
59b1b4e4-b603-4653-b4b8-1de5b0cc036a
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Bridgwater
Description
SDC, Bridgwater - with flexibility of working from home, minimum 3 days a week in the office.Are you a driven Project Manager ready to take the next step in your career? Do you have experience leading
Reference
14a803c9-f247-485f-a93e-23e5d62f7c63
Expiry Date
01/01/01
Salary
Location
Sizewell
Brand
EDF UK
Job Type
Hybrid
Department
Nuclear Operations
Location
UK
Description
Governance and Assurance Lead (Cyber)Are you ready to make a significant impact on the safety and effectiveness of IT services within Nuclear Operations?As the Governance and Assurance Lead (Cyber), y
Reference
a7e03128-0916-4383-b16b-dbceb29f1e11
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Bridgwater
Description
Operations Instructor - EPRJoin us as an EPR Operations Instructor, and you’ll join one of the most exciting and challenging projects within EDF, as we continue to lead the rebirth of nuclear in the U
Reference
a1b47325-1ba2-499c-bb1b-fdac45f2322f
Expiry Date
01/01/01
Related articles
Content Type
Employee StoriesPublish date
07/02/25
Summary
Hannah began her career in EDF's nuclear family with an industrial placement in Nuclear Operations, and she now leads the chemistry team for pre-ops at Hinkley Point C. Read on to find out how E

Teaser
Early CareersContent Type
Employee StoriesPublish date
21/01/25
Summary
We welcomed eight new apprentices onto our Wind Turbine Technician apprenticeship scheme in September. They’ll spend 18 months learning the theoretical side of the role at Tyne Metropolitan College in

Teaser
Early CareersContent Type
ArticlesPublish date
15/01/25
Summary
The final stages of the recruitment process will vary, depending on the programme you've applied for. Here’s what you can expect: Graduates and Apprentices: You’ll attend an assessment centre, whi

Teaser
Early CareersContent Type
ArticlesPublish date
15/01/25
Summary
The video interview is a great opportunity for us to get to know you better and for you to get a feel for the role you’ve applied for. This is a one-way interview with scenario-based questions desi
.png)
Teaser
Early CareersContent Type
ArticlesPublish date
15/01/25
Summary
Submitted your application? If successful, the next step is the Online Assessment. The Online Assessment is an engaging and interactive way to showcase your unique behaviours while giving us a ch

Teaser
Industrial PlacementsContent Type
Employee StoriesPublish date
03/01/25
Summary
Duwane joined EDF in September 2022 to complete a 12-month placement with our HR Resourcing team. We spoke with Duwane about what attracted him to choose EDF and how this opportunity will supp

Teaser
Industrial PlacementsContent Type
Employee StoriesPublish date
03/01/25
Summary
James joined EDF in September 2022 to complete a 12-month placement with our Creative Content team. We asked James to share what insights the placement is offering into the world of work and h

Content Type
Employee StoriesPublish date
02/01/25
Summary
What do surfing and software engineering have in common? They’re both passions of our Senior Software Engineer, Jeremy Brooks. And with our flexible working policies, he gets to enjoy both in

Content Type
Employee StoriesPublish date
02/01/25
Summary
As Head of Engineering, Heather leads a team of more than 200 engineers for Nuclear Services at EDF. She’s been with EDF (then British Energy) since 2002 and within Nuclear Services’ technical

Content Type
Employee StoriesPublish date
02/01/25
Summary
Ever wondered what wine has in common with the equipment in a nuclear power station? As our Supply Chain Logistics Manager, Senga Lebo, will tell you, they both need to be transported safely f
Recently viewed jobs
Salary
Location
Morecambe
Brand
EDF UK
Job Type
Site-based
Department
Nuclear Operations
Location
Morecambe
Description
Are you a problem-solving enthusiast with a passion for HR and Employee Relations? Do you love finding creative solutions that make a real difference? Our full-time HR Case Advisor role at Heysham 2 P
Reference
dd5dd66c-37de-43b5-831b-cc304fe1b42a
Expiry Date
01/01/01
Salary
Location
Gloucester
Brand
EDF UK
Job Type
Hybrid
Department
Nuclear Services
Location
Gloucester
Description
Gloucester Business Park, Gloucester - with flexibility of working from home, minimum 3 days a week in the office.This is a fixed term contract until June 2026.Are you an experienced Cyber professiona
Reference
b4e0b531-851f-4a48-9d5a-b0c7b059e150
Expiry Date
01/01/01
Salary
Location
Gloucester
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Gloucester
Description
Gloucester Business Park, Gloucester - there will be opportunities to work regularly in our offices in Bristol, Bridgwater, Cannington and at Site.Flexible and blended working arrangements are also av
Reference
dae7cc21-2200-4506-a910-3bd6f392c964
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Site-based
Department
Hinkley Point C
Location
Bridgwater
Description
Are you driven by the challenge of making complex engineering systems perform at their very best through expert commissioning? Are you excited by the idea of working alongside a wide range of discipli
Reference
ad47e252-c26f-4d0a-aba2-731f7e06e2f9
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Bridgwater
Description
Full-Time, Contractual location of Bridgwater, 3-4 days a week in office, work from home available. Are you confident in your ability to lead commercial strategies across complex, high-value contr
Reference
0fa6a91f-a2a4-4542-8a23-99775ef4de8a
Expiry Date
01/01/01
Salary
Location
London
Brand
EDF UK
Job Type
Hybrid
Department
Nuclear Operations
Location
London
Description
Governance and Assurance Lead (Cyber)Are you ready to make a significant impact on the safety and effectiveness of IT services within Nuclear Operations?As the Governance and Assurance Lead (Cyber), y
Reference
2e4cb337-6f0d-4398-ab29-41825a520333
Expiry Date
01/01/01
Salary
Location
Bristol
Brand
EDF UK
Job Type
Hybrid
Department
EPR Engineering
Location
Bristol
Description
Location: Aztec West, Bristol (hybrid working) Are you ready to power the change that will help Britain reach Net Zero? At EDF, we're on the frontline of delivering the next generation of nuclear powe
Reference
59b1b4e4-b603-4653-b4b8-1de5b0cc036a
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Bridgwater
Description
SDC, Bridgwater - with flexibility of working from home, minimum 3 days a week in the office.Are you a driven Project Manager ready to take the next step in your career? Do you have experience leading
Reference
14a803c9-f247-485f-a93e-23e5d62f7c63
Expiry Date
01/01/01
Salary
Location
Sizewell
Brand
EDF UK
Job Type
Hybrid
Department
Nuclear Operations
Location
UK
Description
Governance and Assurance Lead (Cyber)Are you ready to make a significant impact on the safety and effectiveness of IT services within Nuclear Operations?As the Governance and Assurance Lead (Cyber), y
Reference
a7e03128-0916-4383-b16b-dbceb29f1e11
Expiry Date
01/01/01
Salary
Location
Bridgwater
Brand
EDF UK
Job Type
Hybrid
Department
Hinkley Point C
Location
Bridgwater
Description
Operations Instructor - EPRJoin us as an EPR Operations Instructor, and you’ll join one of the most exciting and challenging projects within EDF, as we continue to lead the rebirth of nuclear in the U
Reference
a1b47325-1ba2-499c-bb1b-fdac45f2322f
Expiry Date
01/01/01