Shared experiences: hidden disabilities

With around 21% of working age adults in the UK having some form of disability, we asked Sarah Stephenson-Hunter, the University’s Staff Disability Advisor, if that percentage is reflected at Oxford.    

Sarah replied, ‘We have low disability disclosure rates at Oxford. There's a variety of reasons for this. I think staff still have a level of anxiety around disclosing details of a disability that’s not visible, either because they’re worried it will change the way colleagues and managers perceive them or how it might affect their career. 

‘People can choose whether or not to disclose of course – but doing so does mean that they can then benefit from the support we have available at the University.’ 

Members of the University’s Staff Disability Group share their experiences

  College Assistant Librarian  

I wish that people were more aware that COVID isn’t over for everyone, especially for people with chronic immune system illnesses. 

I’m fortunate to receive support both from the University through the Disabled Staff Network, as well as more immediately as a member of staff at a college. My line managers have been very supportive, and have made some reasonable adjustments, including allowing me to work one day per week from home and having the afternoon off to rest. I work the same number of hours each week, but this one change has made an enormous difference to the management of my chronic fatigue. A little flexibility can go a long way!  

I wish that people were more aware that COVID isn’t over for everyone, especially for people with chronic immune system illnesses. My manager and colleagues in my small department have a good understanding of my health issues and risk factors and have been very understanding and careful – including continuing to wear masks in close spaces and keep distance, for which I’m grateful. My manager has also allowed me to continue to start and finish work earlier so I can avoid the busiest buses.   

However, I get the sense that some of my other colleagues in the wider college, with whom I perhaps haven’t shared as much about my chronic illness, think everything should be completely back to normal, and that I’m being a bit strange and paranoid to continue mask-wearing and being cautious when it isn’t ‘required’.   

Support worker in Social Sciences  

The University definitely feels a safer place to be slightly wonky than other corporate workplaces.  

I’m still new to speaking up about my condition at work (even though I’ve had it most of my life) and understanding what I can bring into the workplace, and that’s difficult sometimes.  

I have a mental health condition (anxiety, depression, and PTSD) and can get easily frazzled if there are too many transitions in the day (switching between tasks or switching between communication channels). Working in the office can be difficult when it’s busy because I am a people person and do like chatting and asking questions – but that does takes it out of me sometimes before I realise it.  

I do feel more able to explore the support available than I have in any other job and the University definitely feels a safer place to be slightly wonky than other corporate workplaces. Having flexible working really helps. The days I work from home are so much easier. And being able to access someone to talk to about what is going on is helpful. I’m part of the Staff Disability Network and I’m trying to use it a bit more – to contact others who have the same difficulties I do.  

It's great when colleagues help make work enjoyable and encourage me to get outside, and I am happy to be asked about my condition. But I don’t want people to try and fix it – even if they have the same issues as me. And managers shouldn’t try to take on the role of a therapist or psychiatrist either.  

Not everything I struggle with at work is to do with my condition – sometimes there are interpersonal conflicts or process problems. Occasionally I might need extra time, help or support and I am sometimes late to work, but it’s not because I don’t care about being on time. Sometimes I just don’t realise I’m affected by my illness – it’s part of the illness, but I’ll get there.    

Elizabeth, Departmental Librarian 

I prefer being asked what would help me to do something, rather than decisions being made for me or giving someone else the task.

I have a condition called multiple sclerosis. Symptoms include dealing with mental and physical fatigue, pain and sometimes becoming confused or verbally slow.  

My department, in partnership with Occupational Health, has been brilliant with reasonable work adjustments. These include providing voice recognition software, managing my commute through the Access to Work scheme, flexible working arrangements and, most importantly, a place to rest.  

On good days I work longer hours to build lieu time for recovery time on bad days and some hospital appointments. It would be great if the University went further and investigated introducing disability leave days. Sometimes I need days off when I’m not ‘sick’ but dealing with the condition.  

My line manager is always understanding and helpful, but I worry that I’m sometimes considered to be ‘skiving’ by some colleagues. In reality, I am always pacing myself to carry out a job I love and to be as reliable as possible. 

I really appreciate patience and understanding from others, but I don’t want to be mollycoddled or dismissed. I prefer being asked what would help me to do something, rather than decisions being made for me or giving someone else the task.   

Being told ‘You look well’ can feel particularly insensitive, even if well meant. My appearance doesn’t reflect what I am coping with. I am open about my symptoms, but don’t always want to discuss them. If I say ‘I’m okay,’ it might be a difficult day when I don’t want to discuss it. If I’m chatty and go into details, it’s a day when sharing is easier. I realise this could be complex for others to balance and understand, so I appreciate the efforts my colleagues make to include me or when they try to be aware of what I’m dealing with.   

Academic in Medical Sciences  

I do sometimes wish that everyone understood that if a person looks “normal” or healthy it doesn't mean that they are – appearance can be largely or entirely unaffected by a condition.  

I have a condition that, along with symptoms including fatigue and pain, makes me prone to infections and more likely to experience a severe illness if I do get an infection. I would also need to interrupt my usual treatment, be seen by a doctor and, if I get COVID, receive antivirals. I am therefore cautious, both at and outside of work. I appreciate it when colleagues stay at home if they have an infection. I sometimes wish that people understood that if a person looks 'normal' or healthy it doesn't mean that they are – appearance can be largely or entirely unaffected by a condition.    

Going to work in person often makes me more tired physically, which makes me less productive. I can work partly from home, which allows me to manage symptoms more easily and is made possible by providing an online option for meetings and seminars. Working from home does not mean less motivation, less productivity, or not working hard enough. I enjoy spending time with colleagues but having flexibility can lead to better work and less need for sick leave which would have been necessary if I had to work on site full time.  

During the pandemic, technology quickly evolved to enable glitch-free video calls and online events. I was able to attend events that I was previously unable to travel to. Although some aspects were worse, such as lack of personal interaction with colleagues, it felt as if people with and without disabilities or health conditions had suddenly become the same. I appreciate that for many people a return to pre-pandemic ways of working is welcomed and rewarding, but for some it is yet another source of uncertainty and concern. I hope that people with health conditions continue to be given equal career opportunities.   

Deb, Data Architect 

With [reasonable] adjustments, I’m a successful Data Architect, team leader and line manager.

I'm autistic, and I experience high anxiety. Many of my work strengths are characteristic of those conditions.   

I've had fantastic support from colleagues since my autism diagnosis five and a half years ago. I have adjustments to help me work at my best. I manage the volume and timing of meetings in a day and week and have gaps between meetings. That’s because people interactions deplete my energy — even positive ones. I work four days a week, because I was finding full time exhausting. For autistic people, everyday life takes a significant mental toll. 

To help with other effective ways of working, I'm having specialist autism work coaching. That's funded by the Access to Work scheme. With these adjustments, I’m a successful Data Architect, team leader and line manager.  

As an autistic person, I find it helpful if colleagues:  

• ask before booking over the "Keep Free" time in my calendar when scheduling meetings with me. I need that time.   

• circulate meeting agendas and content beforehand. I'm at my best when I can process information in advance.  

• give concrete examples in discussions. That ensures I understand what you mean.  

If you find that someone’s performance is below expectations, explore that non-judgmentally. Even if the person hasn't declared any disabilities or health conditions. They may have challenges you're not aware of.   

They may not even know they have a condition. I didn't – for most of my career to date.  

Imogen, Senior Admissions Adviser  

My team are very open about chronic health conditions and are generally quite helpful if a colleague is struggling. It is really nice to be not only accepted but also supported.

I have Crohn’s disease and endometriosis. On a bad day my pain can be difficult to manage, and I may have to leave my desk frequently to go to the loo – both affect my concentration. I am also particularly affected by fatigue on the days when I am in the office, since the commute is quite tiring.  

The New Ways of Working scheme requires staff to be physically in the office at least two days per week – this is great because not commuting each day helps me manage my fatigue. However, I’m concerned this may change. 

My health conditions can unpredictably flare up and at those times additional flexibility would be appreciated. For example, working in the office just one day on a bad week and then three days the following week.  

Sometimes I’m well enough to work from home but not well enough to commute to the office, and I don’t think colleagues always understand that distinction. People with invisible illnesses often feel pressure to ‘perform’ their illness so that they look ‘ill enough’ to others. This just adds more stress on top of managing symptoms. It is essential to take us at our word when we say we are not well enough to work or to come into the office.  

My team are very open about chronic health conditions and are generally quite helpful if a colleague is struggling. It is nice to be not only accepted but also supported. One colleague regularly checks how I’m doing, and it is so appreciated to have chronic/hidden illnesses ‘normalised’ in the workplace.  

I do really appreciate that the University pays sickness pay from the first day of being ill and from the day you join. Not all organisations offer that. Having a sickness policy which recognises that people do get ill, and doesn’t penalise them for it, is invaluable. 

However, I feel like more could be done to draw attention to colleagues living with hidden illnesses and disabilities by building more flexibility into the New Ways of Working scheme.