The thought of being told at the ripe young age of 21 that you would be needing a wheelchair for the rest of your life is somewhat disconcerting and unfathomable for most. But this is not a hypothetical for Masters student Gemma Bailey-Smith who has recently been diagnosed with a rare genetic condition called Hypermobile Ehlers-Danlos Syndrome (hEDS), which affects her mobility.
Prior to studying at UEA for her undergraduate degree, Gemma, now currently doing a Masters in Environmental Assessment and Management, considered herself to be a very active individual. ‘I first experienced symptoms when I was thirteen. I did gymnastics, netball, hockey, every sport under the sun. I really enjoyed it but I would always sprain my knees or my ankles.
‘From 15-16, I had to wear ankle braces, big ones under my DMs and was undergoing physio. At the age of 16 I had both of my ankles reconstructed.’
Alongside this, Gemma also experiences gastro and hip problems. Upon starting university, she experienced even more pronounced symptoms.
‘I joined UEA Cheer in first year but by second year I stopped because I realised that I just couldn’t keep up. I sprained my ankle for the first time since after the surgery, and broke my thumb. I was a flyer because I’m quite small; they hold your legs and just by touching me, my legs literally looked like Dalmatians. They were just so bruised, and again we questioned why? Of course in Cheer, you get dropped; that’s the nature of it, but all of that didn’t help – my body took it as a trauma response. Now it’s the norm, and I bruise like a peach.
‘I got quite depressed from it all. Just realising that my body can’t do what it used to be able to do or what I want it to do anymore is quite disheartening, so I took a lot of time out of second year because I wasn’t really coping with it all. I hadn’t had a solid answer and I didn’t know what was going on. Just being in pain all the time is quite difficult for people to comprehend unless you’re in that position.
‘The main problems are in my hips, they partially pop out. Because my ligaments don’t work properly, I get a lot of muscle spasms because they are overworking to hold everything in place. I lost muscle mass and then all these other symptoms started to show. My shoulders like to pop out when I sleep which is always fun. It’s a catch 22 because when I’m in my wheelchair, it’s really hard work on shoulders, but when I’m on my crutches, it’s a lot of hard work on my legs.’
In essence, EDS is caused by faulty genes inherited by one or both parents, which make connective tissue weaker. There are several types of EDS, which can affect different people in different ways. Gemma’s specific type is Hypermobile EDS (hEDS). However, as Gemma admits, ‘it’s very misdiagnosed.’ In February 2018, she was originally diagnosed with Fibromyalgia.
‘Before, I was always diagnosed as hypermobile because there are a lot of overlapping symptoms. When I was younger, or when my knee was unstable, the doctors told me it was growing pains and my ankles because I was so sporty. Whereas actually, it was because my body’s make up wasn’t correct. It wasn’t until they put everything together when they actually diagnosed it. So it took nearly around 10 years to get the official diagnosis, which is frustrating.’
It was November 2018 when Gemma was officially diagnosed with hEDS, but this hasn’t prevented her from trying to maintain her busy lifestyle in spite of the challenges she continues to face.
‘It’s a big juggling act between going to lectures, going to appointments, meetings, a lot of hospital time. You learn to be your own P.A., even just planning out a lot of things that you know are going to take up a lot of your energy.
‘I went out one Friday for cocktails at the Rooftop Gardens. Travel and transport is a nightmare. Thinking about how am I going to get there: am I going to take my crutches or my wheelchair? Is it accessible? I got stuck in the lifts, which was quite funny.’
Closer to home can also be quite a challenge. ‘You don’t realise how difficult campus is until you’re in that situation. There are a lot of areas where I’ve been like: ‘I know this has an orange path on it but I could get stuck and I’m really struggling’. I think I’ll get here myself and then will have to call my friend or get someone to help me out.
‘If someone asked me before if UEA is accessible, I would have said ‘Oh yeah, they have the orange lines, it’s really good’; now being in that position, sometimes I’m like ‘I’m struggling a bit today’. There have been times when I’ve been like, ‘Help – I don’t know what to do’.’
Having said that, the meaning of ‘accessible’ differs according to each individual need and disability. As Gemma suggests, ‘it isn’t just a tick box. Because my whole body is affected it can be more difficult for me to self-propel due to my shoulders! People do just look at the orange lines and think that means the paths is accessible to all wheelchair users when this isn’t the case!
‘I’ve been in contact with Student Support Services before. I know it’s a listed building, but at the same time, it’s 2019 now – that shouldn’t be an excuse to not make it accessible. There are a lot of ways they can go around it. Saying that, the accessible rooms in the postgraduate accommodation has really helped but there are still issues and they are very limited in resources.
‘Likewise, being able to ‘spontaneously go on a night out’ isn’t always feasible. I haven’t been on a night out in so many years; logistically it’s a bit of a nightmare. If I did have a good day, say on my crutches, there’s a risk of people bumping into you and making you a lot worse. So it’s a part of uni life that I miss out on now.
‘Sometimes you have to take your care into your own hands, I think that’s very important. The main thing is learning when to say no, when to say ‘actually, I need to look after myself’. I think it’s quite a hard thing to learn. You don’t know your limits until you push them, which I have done so many times [and this] results in days in bed, or having my friends round watching Mamma Mia to cheer me up, because I have overdone it and today I am really hurting. It’s a massive learning curve…It’s hard work and it’s frustrating, but you’ve just got to deal with what you’ve got. There’s no point having a pity-party over it.’
On the mention of friends, Gemma expresses how ‘amazing’ they have been in providing her the support that she requires. ‘When I started my Masters, I’d made a lot of new friends that I didn’t know beforehand. They’ve been amazing with it all. Just knowing that if I’m having a rough day, I can call them and they’ll be there. From saying ‘I’m getting a new wheelchair’, the first thing one of my friends did was say ‘Just made a Pinterest board. This is how we can pimp it out’ and ‘Can we get you flames and racing stripes?’ We deal with it with a lot of humour, which I think is important. If I’m not laughing, I think I would cry a lot more than I do. And get a nickname of ‘Granny’, that’s fine. What more can I ask them?
‘I do think my family have found it quite hard. I used to be so active and sporty and go on hiking holidays with them, and now I’m in a wheelchair. I think because I’m here (at UEA), they didn’t necessarily see the deterioration; they knew what was happening but they don’t see it every day, so that was quite difficult. I call them up most days now and try and go home when I can.’
In regards to more external support, Gemma tells me that a lot of the support groups she has connected with have been found on Facebook. ‘It’s people providing support and explaining how they deal with this problem.’
At the same time, finding the right groups of people with similar spirits is equally as important: ‘you need to be careful because there are people sharing a lot of their problems, and it can get you down sometimes. As long as you join the right ones and where people are motivational… Sometimes GPs and doctors aren’t the most knowledgeable about the condition. It’s the little things, like they don’t see you struggling to make a cup of tea, whereas someone that struggles daily can say ‘Oh, I do it like this’. That’s where occupational therapy has been really good and helping with the day to day stuff.’
The biggest challenge Gemma currently faces now is buying a specialised wheelchair worth £12,000 which will allow her to take part in a field trip to Devon in April. Here, she’ll be able to collect data for her work. She explains how she chose the specific wheelchair. ‘I tried out a few – this one is very specialist in what I need it do be able to. Off terrain, I can do my data collection and assess the environment. For me, it needs to be foldable to get in and out of the car and electric which is the key thing, so I don’t have to tire myself out or put my shoulders at risk of injury. Having the big wheels at the front helps with balance. It’s really clever and will do the job across any land I come across.’
Subsequently, due to the dear price of the chair and the short amount of time before the fieldtrip to purchase it, Gemma started a crowdfunding page via gofundme on News Year’s Day. ‘When I set it up, I thought this could take a few years. But everyone has been so kind. Even people with EDS have been in contact. It’s nice to know that someone in the same position can talk about it. Not only am I fundraising and helping to get myself that target and do the job I want, but also raising awareness about a condition which isn’t well known, and to see the struggles of it.
‘I think it’s also good awareness to not stop or feel like it will hold you back. I’ve always wanted to do environmental consultancy and decided to do my BSc [which I] struggled through for three years. Now I’m struggling to do my Masters and I feel like I don’t want to trip at the last hurdle and not get the career I want because of accessibility issues. It’s trying to find a way around that, and for me that’s the chair.
‘If I don’t reach my target, I probably would work out ways to still be involved, whether it’s getting a minibus to a certain spot or being Skyped in, a suggestion from Student Support, but it just isn’t the same as being in the actual environment. I just love being outside and sitting at a desk all day every day, it’s not for me – I need to be out there doing things. I’d hate to not be able to do that.’
When asking her what else the wheelchair could help her with should she reach her target, Gemma replied: ‘UEA has such nice scenery and it’s such a shame to be missing out on that aspect of uni life since first year. I think that going around the broad is going to be one of the first things I do.’
At the time of writing, Gemma’s gofundme page has now reached over half of her target. You can visit her page and donate via the following link: https://www.gofundme.com/allterrain-wheelchair-funding.