Be Kind: Living with a Hidden Disability

This month, as part of UK Disability History Month (22nd November – 22nd December) and International Day of Persons with Disabilities (3rd  December), we’re focusing on disability.

In the UK today, there are 13.3 million people living with disabilities. For many of these people, you wouldn’t know they have a disability just by looking at them. They don’t use a wheelchair, or crutches, or hearing aids. Yet their condition continues to affect their quality of life just as significantly, leaving them in constant pain or making simple day-to-day tasks very difficult. These disabilities are known as ‘hidden’, ‘invisible’, or ‘unseen disabilities’.

For many effected by a hidden disability, they are often ignorantly and unfairly labelled as “attention-seeking” or “imagining it” by those who do not understand the impact of these conditions on a person’s daily life.

To help you understand what it’s like to live with a hidden disability, a member of staff has written a personal account about their experiences:

“You’re not old enough to have arthritis?”

“You wouldn’t know you have arthritis – you look fine!”

If I had a pound for every time these things have been said to me, I would be very wealthy.

I was diagnosed with Rheumatoid Arthritis (RA) when I was 25, in 1996. Just to get to a point of diagnosis was a struggle. It took 18 months of recurrent visits to my GP with pains and stiffness in different parts of my body, being told there was nothing wrong with me, to the point that I believed I was imagining the symptoms before the Rheumatoid Factor decided to show itself in my blood results.

A diagnosis was a massive mental milestone, as I could finally put a label on what was wrong with me. Following diagnosis, it was a further six months before I crept to the top of the waiting list and was able to see a consultant, by which time my weight had dropped dramatically, several of my joints were painfully swollen, and I struggled to complete mundane tasks such as making a cup of tea or doing up some buttons. Finally getting a treatment plan was another milestone and then the realisation of a lifetime of hidden, chronic pain slowly began to dawn.

RA is like being on a never-ending rollercoaster – I do not have pain free days, but some days are better than others. Also, I constantly feel tired. Chronic fatigue (a little-known symptom of RA) is a most unwelcome guest when looking after a young family and elderly parents.

I take a whole host of medication, both daily and weekly. The weekly medication is not pleasant and is not something I relish taking every Sunday evening. Yet, like many people with hidden conditions, I carry on, as I’m determined that this condition, although limiting how I live some aspects of my life, will never defeat me.

I do not say all this to garner sympathy. I do not, and never want to be, defined by my RA, and the last thing I want is to be pitied. Having lived with chronic pain for over 20 years, I have found workarounds for everyday activities, so that only those closest to me know when I’m having a bad day.

Around 1% of the population in the UK has RA, and this is only one of a number of conditions where a person’s illness, limitations and pain remain hidden. Being diagnosed with RA turned my life upside down, but despite this I have learned some very valuable lessons and now, more than ever, realise the importance of being kind, patient and understanding, as we can never automatically know the challenges family, friends and colleagues face in their everyday life.

So please do not judge. Instead:

  • Be kind to the person who is walking too slowly for your liking.
  • Be kind to the person in the supermarket who asks for help to reach something on the shelf.
  • Be kind to the person who appears able-bodied who has sat in an accessible seat on the train.
  • Be kind to your colleague who is too tired to interact.
  • Be kind to your friend who cancels a night out at the last minute.

Be kind, as you can never know the journey people are on and the barriers they have overcome (whether RA or another hidden condition) to get where they are today.

To find out more about hidden disabilities, please visit the Invisible Disabilities Association’s webpage. Or, email us at to find out how you can get support, or help support others.

The Disability Interest Group (DIG)

The Disability Interest Group (DIG) is for anyone who wants to help promote a positive, safe and respectful environment for disabled students, staff and visitors. It’s a joint network, open to all disabled and non-disabled staff and students at Newcastle University.

Today (22nd of November) marks the first day of UK Disability History Month, which focuses on the history of people with disability’s struggle for equality and human rights in the UK. This month includes International Day of People with Disabilities (3rd of December), which is the day that the DIG is hosting their celebratory event, to highlight and celebrate the successes of this year and to update people on what is coming up in 2019. The event will also include a talk by Liam Isaac, NUSU¹s Inclusive Sport Officer about his great work in improving access and inclusion in University sport. The event will run 12-2pm in the courtyard, and lunch will be provided. Please book here.

To find out more about the DIG and the work they’ve been doing, I spoke to Richard Boggie, Assistant Director for HR strategy and member of the DIG committee.

Why was the DIG formed?

The network was relaunched in October 2017, with Jackie Leach Scully as Chair. We were inspired by the success of other networks, such as NU Women, and by the increased interest across the board in staff networks and EDI in general. We wanted to ensure disability issues weren’t going to be forgotten or left behind in this shift, and so we relaunched the DIG. Importantly, as part of this relaunch, we redesigned the network to be not just for people with disabilities, but also for allies.

Why did you join the DIG?

I’ve always been involved with the DIG before it was relaunched. I wanted to use my background in HR to help affect change, and from a professional point of view, I wanted to know if things weren’t working for those with disabilities. But also, from the point of view of a disabled person, I wanted to feel as though the University is doing all it can to make the experience inclusive and accessible for everyone.

For me, the network is about having a safe space to discuss openly the issues affecting me, so that I can seek help, as well as helping others facing similar issues.

What do you feel the DIG is important?

Above all, we want the DIG to be a safe, supportive environment. For many of our members, they are the only disabled person working in a unit or in their peer group, which can be a lonely experience. The DIG helps these people to feel as though they are not alone, and to talk to others who’ve had similar experiences and have worked out how best to deal with them. For this reason, a large part of our network is based around signposting to access support and advice.

Although our membership represents a large range of disabilities, we often have similar experiences, so are able to have a joke as well as share what is troubling us, because it’s a safe environment. It is also good to bring together a range of different disabilities, to learn about them and highlight common issues.

Finally, we’re also a resource for others. If individuals or departments want help with disability issues, we have members that can advise them. We can also talk directly to University services to make changes. For example, if we’re informed something is going wrong in an area such as estates, we can go directly to them to talk about it.

Can you tell us a bit about some of the things the network has been doing this year?

The work we’re probably most proud of this year is the adjustments we’ve helped make to the recruitment and induction process for staff, as it will benefit so many staff members. We feel this was done in a really inclusive way, by holding workshops and focus groups with our members, in which we looked at their experiences and what they hoped the process would look like to develop actions to improve the experiences of staff joining the University in future.

We have also felt extremely supported by the University this year. We secured funding from the EDI Fund and from Student Wellbeing for a live captioning service for University events and talks, which is currently being trialled. One of our committee also bid for some money to create some more representative images of staff and student diversity at NU for use on University communications and the website. If you’d like to volunteer to participate in this photography, please contact Becca Wilson.

We’ve also been able to take forward issues raised by our members to the committees we sit on and make important changes, such as ensuring all accessible toilets have working emergency cords.

Where you might see the network going in the future?

This year, we’re hoping to build on the success of our first year by growing our membership and running more events for all members to attend. In particular, we’d like to focus on running more positive, celebratory events. So far, we’ve done a lot which looks at what we can improve and change within the University, so now we’d like to think about what has been successful and celebrate this. This is what we intend our event on the 3rd of December to be.

I also hope that DIG will be able to influence University policy properly, in particular on recruitment and induction, and on accessibility at events. We’re also looking to work with the student disability society (Disability and Neurodiversity Society) to influence student issues.

If you’re staff or student with a disability, or an ally, and you’re interested in getting involved with the DIG, visit our intranet page to find out more about them. You can also follow them on Twitter, or join their mailing list. Their celebratory event will be hosted on the 3rd of December, so sign up to come along! 

Student Equality and Diversity Bursaries: An Invitation to Inclusion

To find out about another great project which has been funded by the Equality, Diversity and Inclusion Fund (EDIF), I spoke to Dr Laura Delgaty and student, Jenny Peal, about Student Equality and Diversity Bursaries.

The project, led by Laura Delgaty, who’s part of the School of Medical Education, aims to “support and encourage student led small scale equality and diversity research at Newcastle University”. 

The project had been awarded £2,500 from the EDIF, which was distributed between 6 students in the form of bursaries.

Three bursaries of £250 each were awarded to Undergraduate students from each of the three Schools, and a further three scholarships of £500 were awarded to Postgraduate students, again one from each of the three Schools.

One of the students who was provided with an Equality and Diversity Bursary was Postgraduate student Jenny Peal, from the School of Medical Education.

Jenny’s project was aided substantially by the bursary she was awarded. She studied 15 female cardiologists who worked and trained in a male-dominated environment, focusing on the impact this environment had on their success and development. The process of writing up the interview transcripts could take up to 5 hours at a time. This lengthy process, alongside full-time work, was only made possible thanks to the £500 bursary Jenny received.

If you’d like to find out more about other projects funded by the EDIF, click here to see our other blog posts about them.

Or, if you’ve got a burning idea for a project that you’d love to make a reality, apply for some money from the EDIF before the 23rd November! To find out more about the application process, click here, or email us at 

Highlighting the Under-Highlighted

In this instalment of our blog series on projects within the University that have been supported by the Equality, Diversity and Inclusion Fund (EDIF), I spoke to Dr Joanna Matthan and Agne Krisciunaite about their project: Highlighting the Under-Highlighted.

The main aim of this project is to highlight and celebrate the unsung  staff and students who have helped champion the values of Equality, Diversity and Inclusion, those who perhaps haven’t received the full recognition they deserve for their invaluable work surrounding EDI. This will be done through a series of high-profile vlogs.

The project, which received £3,000 from the EDIF, works by allowing staff and students to nominate someone who has shown commitment and passion for the EDI agenda. Those nominated (either by others or by self-nomination) will be invited to discuss their work as part of a vlog, which will be run as a weekly feature across the NU homepage and through University social media channels such as Facebook and Twitter.

There have currently been 3 ‘unsung heroes’ who have taken part in the project and filmed vlogs. There are plans to post these videos throughout the autumn term, with a video every two weeks.

Agne Krisciunaite, a key member of the team who helped set up the project itself, gave me some valuable insight into the work currently going into Highlighting the Under-Highlighted: “overall, as a member of the team, I can say that this so far has been a very enjoyable experience, meeting people from different backgrounds and different roles across campus. One could never imagine what an interesting story most of the staff have to tell!”

Make sure to keep an eye out for the vlogs that will be posted on both the NU homepage and through Twitter. If you would like to nominate someone who you feel needs recognition for the valuable work they’re doing, or someone who symbolises the values of EDI, make sure to send your nomination details to Joanna Matthan or Agne Krisciunaite.

Alternatively, if you think you’ve come up with an idea for an EDIF project  to promote engagement with the EDI agenda at the University, click here to find out more about EDIF, or email us at before the call closes on the 23rd November!

Sweetening the Message

As part of our blog series highlighting projects within the University which have been supported by the Equality, Diversity and Inclusion Fund (EDIF), I spoke to Dr Ann Fitchett, who came up with the idea of Sweetening the Message.

Sweetening the Message aims to raise awareness of Equality, Diversity and Inclusion, across our Faculty and the wider University. Packets of jellybeans displaying the message “supporting all to reach their potential”, have been distributed throughout the University.

Thanks to the EDI Fund, Sweetening the Message received £5000 to buy 5,000 packets of jellybeans!

The idea came from Stonewall, when Newcastle signed up as a Stonewall Global Champion back in 2016. When representatives from Stonewall came to Newcastle, they handed out packets of sweets with a message about their work attached, to raise awareness about what they were doing.

Dr Ann Fitchett, who is responsible for the Faculty’s engagement and outreach, alongside Dr Tom Smulders, the Chair of the Equality and Diversity Committee of the Institute of Neuroscience, embraced Stonewall’s sweet idea.

Sweetening the Message will help spread the message of support, and the ambition both FMS and Newcastle University have to support all students and staff in reaching their full potential.

Keep an eye out for students handing out jellybeans around the Faculty and campus soon!

If you’re a student or a member of staff at Newcastle University and you think you’ve got a great idea for a project to promote engagement with the EDI agenda at the University, click here to find out more about EDIF, or email us at Funding closes on the 23rd November, so hurry up!