Navigating hidden disabilities in the workplace: A conversation with Francesca and Remi

Globally one in six of us live with a disability. And of those, it is estimated that up to 80 per cent are living with a non-visible disability. Hidden disabilities, or non-visible disabilities, are those that are not always apparent to others and include a diverse range of conditions. 

In this insightful interview, Francesca and Remi, two individuals with hidden disabilities, discuss their experiences and the challenges they face at work due to their conditions. Francesca has Hypermobile Ehlers Danlos Syndrome (hEDS) and related comorbid conditions, while Remi lives with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. 

They shed light on the impact of their hidden disabilities, the support they receive at the Sanger Institute, and their hopes for the future, including their new involvement in co-chairing the Disability Network at Wellcome Genome Campus.

Can you disclose your hidden disability and what impact it’s had on you?

Francesca: I have a genetic connective tissue disorder called Hypermobile Ehlers Danlos Syndrome (hEDS) along with two comorbid conditions, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome. I started getting symptoms when I was about 15/16 and was diagnosed when I was 18.

There is no cure for hEDS and the cause is unknown, although there is a study in progress to try to identify some causative variants. Some of my symptoms are joint hypermobility, frequent dislocations, fast heart rate, fatigue, and chronic pain, among many others. These have affected my ability to engage in activities I love, like dance, and can be mentally and physically challenging.

Medical trauma has also impacted my day-to-day life, making it difficult to open up about my hidden disability. This trauma is both physical and emotional. Physically most of it stems from the surgeries that I have had and complications from these. Mentally, it’s mostly related to medical appointments. Traumatic encounters with medical professionals are all too common for people with rare and/or complex conditions. Doctors have often not believed me when I talk about my symptoms or have told me that my condition is all psychological. This makes it harder for me to be open about my condition.

Remi: I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. I started to get symptoms when I was 13 and was diagnosed at 14. These conditions have caused chronic pain, fatigue, and post-exertional malaise, among many others. As I have grown up with the conditions I have gotten good at managing my symptoms to a functional level, however, these conditions are not stable, and over the years I have been in and out of a wheelchair due to flare ups and relapses in symptoms. There is limited research into my conditions and therefore there are no cures. I’ve had to give up competitive sports and missed out on many “normal” teenage experiences. These conditions, coupled with limited research, led to traumatic experiences and anxiety about discussing my disability. Many people didn’t believe me or they would hear the words ‘chronic fatigue’ and tell me to ‘go to bed early’ or ‘get some more sleep’ — I wish it was that easy! Similar to Francesca,  I have also had traumatic experiences with medical professionals which has led to anxiety and affected my ability to talk about my conditions.

What’s it like having a hidden disability at work?

Francesca: One of the most difficult things about having a hidden disability at work is feeling like I can’t talk about it. There are lots of reasons why people with hidden disabilities may not talk about their conditions at work. My conditions can be very unpredictable, which makes it difficult to explain what I am going through and what I need, as these can change constantly. I never know how I will feel each day, or even each hour, which can be stressful and frustrating and makes planning very difficult. Besides these challenges, the fear of not being believed and the fear of ‘making a fuss’ can make it difficult to talk about.

Outside of work, we all try to have a good work-life balance. But many hidden disabilities, including mine, affect energy levels. This can make it hard (or sometimes impossible) to do things outside of work, thus making it difficult to maintain a good work-life balance. It makes me feel sad and frustrated to have to miss out on things. Trying to maintain a good balance is a challenge that I am constantly tackling.

Remi: Having a hidden disability at work is very challenging. This was my first job after university and I naively started full time, which I quickly realised I could not manage. This was hard to deal with as I was scared of losing my job and of relapsing too much that I wouldn’t even be able to carry on at the job. Luckily, my team has been very supportive, allowing me to work from home on my bad days and supporting me so that I am now working a part time contract. Flare-ups and unpredictability can be challenging.  I could wake up one morning and be mentally ready to work but my body physically would not be able to make it onto campus. As lab staff, that is really frustrating because you feel like you’re letting your team down and missing out on opportunities. Disclosing my disability initially caused anxiety due to the fear of disbelief or being thought of as seeking “special treatment.” I’m grateful that I have good friends and colleagues at work who understand and support me through this.

Do you feel supported by your line manager, how do they support you?

Francesca: I’ve had several line managers since starting at Sanger as I have been on multiple rotations. They’ve been accommodating and understanding of flexibility, though they weren’t aware of the full extent of my condition. Until recently, I had never explained what my condition is and how it affects me beyond the very simplest explanation.  It would have helped me to feel more supported if my line managers had understood more detail earlier on.

Remi: I’ve been lucky that all of my line managers have been supportive. My current manager is particularly helpful, trying to understand my conditions and often checking in on me. They have also worked with me to find the working pattern that suits us both, which in this case is part-time, and assisted me with the Group Income Protection application process which I am very grateful for.

How does the Sanger Institute support you?

Both: Sanger has quite a lot of support in place for people who have disclosed their hidden disabilities, including flexible hours, hybrid working, occupational health services, and initiatives like the reverse mentoring scheme and Sunflower lanyards, however there is not enough awareness of these support methods. The main thing that is missing at Sanger in terms of support is the open conversation and awareness surrounding hidden disabilities which will help to make more people feel more comfortable to open up about it. We need to see people across the institute, at all different levels, starting to talk more openly about this.

Francesca: One of the things that has supported me the most is the physio offered by the occupational health team. This was particularly helpful when adjusting to sitting in the office for long periods.

Remi: I am now benefitting from Sanger’s Group Income Protection scheme, which will hopefully help me recover some lost income due to my part-time work arrangement.

What would be your advice to colleagues to best support someone with a hidden disability?

Both: There are lots of things you can do as an individual to support a colleague with a hidden disability. Try to notice changes in your colleagues more and consider whether you feel they may be struggling with something. Also make sure you notice Sunflower lanyards. We need everyone to be more aware of them and understand their meaning. If you do notice a change, create time and space for more genuine conversations. Try to make them feel comfortable to open up, but don’t force it. Ask questions and research things to show people that you are interested, you care, and you believe them. Try to avoid a pity response, instead focus on showing interest and seeking to understand.

The best thing you can do is to avoid making assumptions. Instead of assuming, ask them about it, research it and try to understand the truth of their situation as much as you can. This is how you make someone feel more comfortable being open about it.

Why have you chosen to step up and co-chair the Disability Network?

Both: There are several reasons why we have decided to take this on, the main one being that we don’t want to stay quiet anymore. We’ve had enough of feeling ashamed to talk about our hidden disabilities, so now we want to talk about it and encourage others to do the same.

Having people to talk to who truly understand what you are experiencing makes you feel so much less confused and alone. We want to create that kind of safe, supportive environment for people here. We have had the chance to be this support for each other since we met. We have realised how beneficial it is and now we want to provide that for others too.

We also aim to drive positive changes and increase awareness at our Institute.

We are ready to share our experiences now. We are passionate about helping individuals with disabilities. So, when the opportunity came up, we had to say yes!

What are your hopes for the Network over the next year? 

Both: We have lots of plans! We want to create support groups where people can come together to share experiences, challenges, ask questions and just feel more understood. We also want to run events and raise awareness of the network and of disabilities. We aim to increase the profile of the network, encourage open conversations about disabilities, and drive cultural changes on campus.

Is there anything else you want to share?

Francesca: We are really passionate about making changes for people with disabilities but we can’t do it all alone. We need people to get involved, but we also need people to just be open to listen and take in what is going on. Try to make even just one small change. Together, we can make a huge difference to the lives of people with disabilities.

Remi: I’m grateful for this opportunity and the support from my team in taking on this role. I’m excited about the future of the network and the culture on campus.