This blog is the first in what I hope will be a series of posts with a range of people … the series will cover topics where my guests and I have overlapping interests. It will run alongside my usual blog posts.

Recently, I had a lovely long chat with Rhoslyn Beckwith, a PhD student at Swansea. We know each other through the Women in German Studies network and we recently discovered that we share more than an academic interest in all things German and memory studies. It turns out that we are also both hypermobile. So, we decided to have a chat about it and discovered that whilst there are similarities there are also differences between the way the condition affects us and how we cope with it. We both agreed that we’d really like more people to understand the condition, so we turned our conversation into a blog post.

Rhoslyn, before we get started on hypermobility, can you tell us a little bit about your PhD?

Of course. So, I am in my fourth year now and I’m working on a thesis entitled “Remembering the ‘Queens of Hearts:’ A Comparative Study of the Cultural Afterlives of Queen Luise of Prussia (1776-1810) and Empress Elisabeth of Austria (1837-1898).” My research really spans memory studies, biographical studies as well as German and Austrian literature and history.

Specifically, I am looking at the way in which Queen Luise and Empress Elisabeth (often better known as Sissi or Sisi) have been commemorated since their deaths in biographical literature, especially the way in which they have been transformed into idealised lieux de mémoire for their respective nations. I also examine to what extent their differing representations, particularly in the wake of World War Two, reflect the way in which Germany and Austria still conceive of their own histories in contrasting manners.

I have also just published my first article with German Life and Letters entitled ‘The New Prussian Renaissance: Literary Commemorations of Queen Luise’ (2021), if anyone is interested in a really fascinating and often forgotten woman, once considered the feminine counterpart of Frederick the Great.

Oh, that does all sound fascinating. I shall give your article a read. Well done on getting it published.

Let’s now turn our focus to hypermobility.  You’re a hypermobile individual – the condition varies – so in what ways does it affect you?

Well, I have the type of hypermobility called Ehlers-Danlos-Syndrome (EDS, also sometimes called hEDS). It mainly manifests itself in joint pain, extreme fatigue, and digestive issues. Along with these delights, I suffer from brain fog, where I struggle to think clearly, lose concentration, and normal words completely escape me. I do a very good impression of someone very ditzy at times.

It also means that I have a lowered immune system, so if someone across the street has a cold, I will catch it. I’m actually only just recovering from a bug that has knocked me off my feet for the last week so there we are – a fun pre-Christmas EDS present for me.

It’s hard to describe EDS well but I would say that it’s a bit like having a never-ending version of the flu. You can have better days and then times when you feel totally floored by it and just can’t get out of bed at all.

I also bruise really easily and my skin splits regularly, because it’s very thin. I honestly could not live without a constant supply of hand cream. Maybe that’s why I have such an affinity with Germany? They do have fabulous hand cream.

It’s not all terrible though, I do have some fab party tricks associated with my joint and muscle flexibility- I can lick my own nose and I can put my foot behind my head. I’m not sure it makes up for the other stuff, but I’m definitely someone who looks on the bright side of things.

Oh, I think looking on the bright side is a really good way to deal with life – whatever challenges life throws at us, it is always better with a bit of humour, and mine can be wicked. I’m not sure I have party trick as such but I do relish the moment when people notice the scar I have on my knee from the operation I had because of my hypermobility – I find it amusing watching people re-arranging their faces and hoping I didn’t notice them gawping in the first place. I never mind though – I’m actually happy for people to ask. So, tell me, what do you wish people would understand about the condition? 

Firstly, I wish that more people realised that the condition exists at all. I also would love it if people understood that you can look outwardly healthy and strong, but actually be suffering an awful lot. In fact, most of the people I’ve met with similar conditions work incredibly hard to blend in and mask their conditions. We may look well but sometimes we are struggling with huge amounts of pain and exhaustion. The trouble is revealing how we are really doing could cause embarrassment and affect our future chances in life. It really shouldn’t, but ableism is still a huge presence in all of our lives.

Even agreeing to do this interview today made me worry that it could change the way people look at me and possibly affect my future career prospects. I really feel strongly though that living with such a condition makes you stronger and more empathetic. I hope to show other people that hypermobility does not make you weaker and lesser than other people. I may have EDS, but I am still a passionate PhD researcher and it certainly doesn’t make me a smaller person.

You’re writing up your PhD at the moment. How would you say the condition affects that? 

Actually, I think that working on a PhD suits me incredibly well. This is just my experience of course and I am aware that other people with similar conditions have very different experiences of university. For me though, I find that my schedule allows me to work when I have my good times and take breaks when I need to. I can’t deny that I find it really frustrating when I can’t work as much as I want to, but I am still working on being more accepting of my hypermobility, rather than constantly being annoyed by what I can’t do.

For me a flexible approach to my PhD really works, as I can write whenever it suits me, rather than doing a regular 9 to 5. I feel I need to stress that this does not mean that I work less than others, rather I will work throughout the week and make the most of my best times. My supervisors are also amazing and very supportive, so I feel very lucky. If I am honest my worst fault is that I’m a bit of an obsessive workaholic (I am incredibly passionate about my subject) and I sometimes find myself taking on too much. I need to be careful not to cause a huge EDS flare-up and making myself even more ill.

I do think recognising our bodies’ needs and acting accordingly is so important, not just in academic work but in life generally. We’re always at our best when we do that. I’ve learned to allow myself time just to be.

Thinking about your viva voce examination at the end of your PhD for a moment – what do you wish your university and your examiners would understand about being a hypermobile academic? 

Oh my goodness, yes the terrifying viva. I must admit that the horror stories of eight-hour-long vivas fill me with panic. Joint pain, fatigue and poor concentration are all things that I know I’m going to have to battle on top of the normal panic that most students face going into such an examination. I know that I’m going to have to request breaks at the start and I’ve been assured that the examiners will be understanding but it still fills me with dread. It’s funny actually that as an undergraduate, I found it quite okay to ask for support in exams (I used to be granted rest breaks) but somehow, I am far more embarrassed when it comes to something as huge as the viva. Perhaps I’ve also internalised a certain amount of ableism and see the world of postgraduate research as a place where disability or different abilities are not accepted. If so, I am sorry and I will do my best to reframe my thinking.

I think it is almost inevitable that we internalise ableism as we tend to try and bend ourselves to fit into the world. I know the prospect of the viva can be nerve-wracking and I heard horror stories too, but it turned out fine and I found myself enjoying it. I’d recommend you or your supervisors just let your examiners know about your hypermobility a bit in advance; they’d likely appreciate it. I’ve yet to conduct a full PhD viva but I have conducted transfer upgrade vivas before and when I do them my aim is to put the person at ease – let them know I’m rooting for them and am looking to enable discussion not to trip anyone up. More to the point if there are mitigating factors I’d much rather know and take guidance from the individual about what they need, we all know our own bodies best, after all. By having that knowledge I know I’m doing my best for them. I can’t speak for others on their approach but I’d encourage you to be upfront.  

Your point about the differences between your undergraduate years and your postgraduate ones is interesting. Do you find that in your experience of university support services, either disability services or wellbeing, that there’s generally been a lack of understanding around the condition and therefore help and guidance hasn’t been forthcoming? 

I have an amazing working relationship with a mentor I see from the Wellbeing Department here at Swansea. She is incredible and has helped me so much but generally I do think there is a persistent lack of understanding about the condition even in student support services. I know that at the start of my degree there was a period when the support services could not decide if I needed to see the wellbeing or the disability department here (they are separated at Swansea). I am just so grateful though for the support I now receive.

What are your thoughts on continuing in academia at the present time, and is your hypermobility a factor in that? 

Now this is one of the worst things about having Ehlers Danlos. I hope it’s come across that I am not the sort of person who feels sorry for themselves or wants to dwell in a pit of despair. In fact, I very rarely want people to know about my condition at all (I know I’m sure you’re all rolling your eyes reading this, given that right now I’m discussing it at length, but seriously I don’t normally make a song and dance of it). Nevertheless, it does make me very upset that sometimes I can see this condition robbing me of a life I wish I could have.

I try not to let my hypermobility control me on the whole and over the years I have developed strategies to work around it, but I do have to be aware of my struggles at times and the world of academia isn’t always as open as we wish it was. Precarious short-term contracts, moving around the country on a yearly basis and the need to continually change GPs and specialists would be incredibly tough for anyone with a long term health condition. That is without considering all of the stress and exhaustion involved with such a lifestyle.

Having said all of this, I haven’t ruled it out because I love research (honestly I could bang on about my thesis for years, I am incredibly enthusiastic about it) and my experience of teaching so far has been brilliant. I’m loathe to let my condition dictate my life but I am also aware that I cannot simply pretend that it doesn’t exist.

I know it is a concern – I can honestly say that the short-termism and uncertainty has been a problem for me, not initially but over time, yes it has, particularly when my condition has flared, yet I’m also aware that short-termism doesn’t solely exist in academia – I find myself on a short-term contract outside of it right now, and I also know that doing what I love brings me such satisfaction that there’s a balance to be sought. But as we’ve mentioned research, let’s turn our attention to some research style thinking in relation to what links us – both the hypermobility and the love of German. I’d be interested in your answer to this question. Have you ever considered the fact that you speak more than one language could actually be beneficial to your hypermobility in terms of strengthening your voice and or that the flexibility allows you to wrap your mouth around words that others may find difficult to pronounce?

I had never considered it before we had this discussion, but actually I was taught several languages from a young age and maybe it has helped me to strengthen my voice, which often sounds a little squeaky (I’m told that’s a part of the EDS and it’s definitely worse when I’m nervous, I sound about 7). Well, that’s lovely, we’re ending on a positive side of EDS, perhaps it does make us more proficient language learners?

I like that positive note to end on. We’ll see what research shows about this. For now, thanks for the conversation and good luck with everything.