My GP told me that I probably have Multiple Sclerosis five days before my viva. This ‘diagnosis’ came after months of severe back pain, balance problems, an increasingly stronger limp and doctors looking at me as if I was making up symptoms and telling me it was just stress instead of performing tests. Ten days before my viva, a GP finally realised the problem was likely neurological and sent me for an MRI scan. I remember breaking down in tears in her office, thinking ‘brain tumour’ while she assured me that it could just be a virus. The MS diagnosis actually came as a relief: my symptoms were finally being taken seriously, with a diagnosis, I could get treatment and I didn’t need immediate brain surgery.
You’d think getting news like this puts everything in perspective and the PhD suddenly feels very small. At least for me, this wasn’t what happened. I had no idea what a life with MS would mean. Getting the PhD suddenly took on an ‘if it’s the last thing I do’-quality (admittedly, I get overly dramatic in high stress situations) and I pushed myself even further. I do not regret this or a single second of my PhD, especially as I was rewarded with a very pleasant viva. Still, the stress of the diagnosis and the viva had severe consequences for my health and walking became increasingly challenging (I was later told I must have suffered several attacks in a row that, unusually, all affected the same part of the brain, presumably the one controlling my left leg and balance).
MS is an auto-immune disease that attacks the central nervous system. The disease can present itself in many forms with different severity. The vast majority (according to the MS society, around 85%) of MS patients has Relapsing Remitting MS, which means that they experience distinct attacks with symptoms like numbness, balance issues, spasticity, problems with the optic nerve and so on. During an attack, the coating around nerve fibres is damaged, leaving nerves exposed and damaged beyond repair. The brain, in its infinite complexity, can re-program itself so that symptoms can go away partially or completely. Sometimes it needs long-term physiotherapy to support this process. Shahd Alshammari calls MS a ‘random disability’ in her post, meaning that the way it presents itself is entirely different for anyone and is pretty much unpredictable. Not only is it impossible to predict how the disease will behave in the future, a lot of medication has only been available for a few years, even months, so there are no long-term experiences. Stress (such as a viva) aggravates the disease.
As it proved to be harder than I thought to get an appointment with a neurologist where I lived in the UK, I decided to move back to my home country to get the necessary medical care. It has now been about six months since I had to return home, spent having lots of tests done to get a definite diagnosis, intensive physical therapy, trying to find the right meds, drinking gallons of green tea (that has been proven to have a positive effect on MS patients), exercising daily (I’ve always hated exercise, but it’s surprisingly easy if you have to), and so on. Having to move away from my University town did not just mean saying goodbye to wonderful friends and leaving a place I love, but also having to give up my affiliation and a (small) chance to be able to get teaching hours after I finished the PhD. Still, I manage to get a lot of research done, write articles, get a book deal, apply for jobs, etc. In other words, carry on as normal career-wise.
The timing of my diagnosis is both blessing and curse: on the one hand, I can use the period of unemployment many people have to go through after the PhD to figure out how to cope with my disease and work on recovering from my last MS attack. On the other hand, I have no idea how my disability will affect my chances of finding a job. It often feels like I have nothing to fall back on to figure things out like a PhD student status or a secure (well, as secure as they get these days) job. I have no experience with the pros and cons of disclosure.
Despite my diagnosis and its unfortunate timing, I feel incredibly lucky. Of course, I never wanted to celebrate my 30th birthday by moving back in with my mum, but it is an unbelievable privilege to be able to do so. I have an amazing family and wonderful friends. I have the enormous privilege to take advantage of my home country’s health care system. I never suffered from depression or this experience would have likely knocked me out completely. MS research is at a high point right now and new meds are being developed. Yet, between an unpredictable, ‘random’ disability and the beginning of an academic career, finding a balance between carrying on as normal and dealing with the realities of my disease is often hard, and demanding.
Seeing facebook posts by friends saying that one day, they will figure out that work/life balance, reminds me of the kind of pressure we all put on ourselves, never having time to actually develop ways to deal with the stress and, in the meantime, writing cheques our bodies may not be able to cash. In my case, I had to pay through a disease I didn’t know I had with, in all likelihood, more severe (immediate) consequences than if I had just listened to my dad and become a primary school teacher. In other cases it may ‘just’ be through back pain and migraines, depression and anxiety disorders. I don’t think this problem is exclusive to academia: most of my friends have an unhealthy way to over-identify with their work and put themselves under enormous pressure. But they get paid better and some of them even have work days that end. Knowing that the stress of my PhD ended with me sitting in my viva worried that I may not be able to stand up again or that I would lose control over my hand serves as a good reminder that I will have to find better ways to cope with stress or avoid it altogether and not put that issue off any more. But I have yet to find out how compatible this is with academia.
This post was kindly submitted by @maikij123, who recently completed their PhD and is now looking for work on the academic job-market. Image an original taken by the author.
Continue the conversation in the comments or talk to us at @PhDisabled on twitter.
Got a story of your own you’d like to share, or questions that need asking? Email us at email@example.com.
UPDATE: We’re very grateful to one of our commenters for pointing out the inappropriateness of using “schizophrenic” as an adjective as this post had done previously. We’re really sorry for making this mistake, and we won’t do it again. The post has been revised accordingly.
I appreciated your post, and can identify with a lot of what you say about the difficulty of balancing postgrad life with managing an illness.
A small note on language, though – please don’t use ‘schizophrenic’ to mean ‘in two minds’. That isn’t what it means, and as someone with a schizophrenia diagnosis, I get fed up with explaining to people that it doesn’t mean I have a split personality, Jekyll & Hyde style.
The Guardian style guide suggests the following: ‘schizophrenia, schizophrenic should be used only in a medical context, never to mean in two minds, contradictory, or erratic, which is wrong, as well as offensive to people diagnosed with this illness; schizophrenic is an adjective, not a noun. After many years we have largely eradicated misuse of this term, although as recently as 2010 a columnist contrived to accuse the Conservatives of “untreatable ideological schizophrenia”‘.
Thanks very much for an otherwise excellent piece.
Hi Ceri, thanks very much for your comment and feedback. Sorry for using this term. We got that wrong. We’ll amend and update the post to reflect your comments ASAP.