Guest Post – Doing a PhD with a chronic illness: a bridge over troubled water

I am a PhD student. I am many other things, too. For example, I have MS (I prefer to say ‘have’ rather than ‘suffer from’). MS is short for multiple sclerosis: a chronic, auto-immune and neuro-degenerative disease. This means that my body attacks itself – my central nervous system, to be precise. Your nerves control pretty much all of your body: your muscles (and sphincter muscles), sensations (numbness and tingling), speech, concentration, and so on. Because of that, potentially, everything is ‘under threat’. And then there’s the physical and mental fatigue, which is difficult in itself. Having said that, not everyone who has MS will have the same symptoms (or all of them); MS is said to have a thousand faces. No doctor can predict how your individual case will develop, and while nowadays there are treatments that may help slow down the progress (if you’re willing to accept the risks and side effects), there is no cure. You simply have to live with it.

Now, I’m not going to use this space to provide a description of MS (there are many websites, such as this one, which do this very well). Nor am I going to give general advice on how to deal with doing a PhD and having MS at the same time. Instead, I’d like to share part of my personal story of living with a chronic illness and how this has affected the way I view my PhD. By doing so, I hope my story will speak to other people who are dealing with similar issues. You are not alone.

There were two good things about my diagnosis: a) I had an explanation for my physical and mental symptoms, and b) it was made when I was already one year into my PhD. I’m not sure I would have had enough self-confidence to undertake such a ‘daunting’ project if I hadn’t already started it – and what a terrible mistake that would have been. Having done one year of research, giving up wasn’t an option. However, the first few months after my diagnosis were a period of huge doubt, fear and uncertainty for me. I simply couldn’t get my head around anything other than myself and my condition. My ever-so-supportive supervisor advised me to take a few months’ suspension, which, after some deliberation, I did. This break from my PhD happened to coincide with the summer months, so I ended up spending some of the time exploring the Greek islands, some of it finishing another project that needed my attention, and some having regular psychotherapy.

In hindsight, taking the suspension was one of the best decisions I’ve ever made. It gave me the time I needed to find myself again and see my PhD from a different angle. Yes, I feel vulnerable and yes, my fatigue makes sustained working and travelling (to conferences, for example) difficult. Some days are good and some days aren’t so good. But I’m enjoying what I’m doing and I can’t imagine doing anything else. I’ve come to realise that the years I’m spending on my PhD will be probably be some of the best in my life: doing something I love, being my own boss and having flexible working hours. Doesn’t that sound like a dream job (well, except for the lack of money, of course)? I’m looking forward to everything that’s still to come: completing my thesis and sharing my findings. What I’m not looking forward to as much is what happens after my PhD: will I be able to find a job (okay, I could end the sentence there!) with my condition? When will I tell my prospective employer? (This article sums it up quite nicely.) Will I be able to make enough money to earn a living with fewer working hours? So many questions costing me so much energy – which I don’t have in excess! But then I remember the wise words of my therapist: ‘We’ll cross that bridge when we come to it’. Also, I’m trying not to compare myself with other PhD students (comparing ourselves with others is something many of us tend to do in general as well). Constantly asking myself why I’m not as far along in my research as other people who started at the same time as me isn’t going to help me. It’s just one more item to tick off on the ‘things-that-cost-me-a-lot-of-energy-and-aren’t-worth-it’ list.

I still have doubts, fears and uncertainties today, but I’ve come to see my PhD as an ally, not as a burden. My thesis and I are forming a partnership; sometimes we get along well and, at the best of times, we even stimulate and encourage each other. Sometimes we go through more difficult times and one of us needs more attention than the other – occasionally at the expense of the other. But, in general, we try to accommodate each other’s different needs: if a deadline is looming and I’m having a bad day, the PhD comes first and life is more difficult; but my PhD won’t sack me if I have a period when strenuous work is impossible. In many instances, my PhD is a bridge over troubled water, so to speak – the thing I can hold on to when I worry about the future. It will always be there and it won’t leave me unless I decide that’s what I want. It gives my life sense and continuity: the things I need the most. That’s how my PhD is helping me, and I feel thankful for that.

 

Note

I have decided to write this blog anonymously. My condition is not a secret, but it is something personal – something that I do not (yet?) feel comfortable sharing with the ‘worldwide’ web. Besides, while MS is part of who I am, it is not everything I am.

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Post-Viva Feelings

Following up on the previous posts (here and here) about preparing for your viva, and the day of the viva, here comes the ‘what happens after your viva ends?’

You will probably be conflicted, unless you managed to breeze through with no amendments. Then you will just be smiling so hard you’ll worry your face will hurt tomorrow. That’s good. Keep doing that. Who cares if it hurts tomorrow? It’s worth it.

If you aren’t one of the lucky ones (i.e., you’re most people), then the moment your viva is over is going to bring all sorts of feelings you can’t really classify. You don’t have to classify them. You don’t even have to understand them. Every single thing you feel after the viva is valid. There’s no ‘right way’ to feel afterwards. Some people, even with many amendments, might be absolutely thrilled. Some with only a few amendments might feel awful that they didn’t do better. A lot of that is going to be something you know going in. If you’re one of those people that wants to knock yourself over the head for getting one question on an exam wrong, you should probably prepare yourself for what you’ll experience if you get a list of amendments a page or more long.

Alternatively, if you are the type of person that’s just glad you passed, no matter how well you did, then you’ll probably be happy no matter how many amendments you got.

Also, if you spent the last six months of your Phd trying to figure out how you could justifiably quit, getting lots of amendments may feel like the worse thing ever, because it means you have to do MORE of your PhD, when you were so glad to be done with it at submission.

Whatever type of person you are, you should prepare yourself for what comes after. The viva is scary and stressful and wonderful, all at the same time, and how you react to it is important to understand going in, because it will make you more confident dealing with whatever happens in that room.

But equally, considering how you will feel if you pass magna cum laude, or if you end up with 12 months of amendments and a complete rethink of your thesis, will at least prepare you for the initial ten million thoughts that go through your head the moment your viva ends. And if you can understand how you will react to whatever the situation is, you’ll be more prepared for it.

I tried to be. I knew I was going to feel bad unless I walked out with no amendments, and since the chances of that happening were in the realm of winning the lotto (I assume), I knew I was going to be very conflicted when my viva ended. I didn’t really understand how conflicted I would be. The truth of the matter is that I had dozens of people congratulating me and the only thing I could think about was ‘I have to do another 6 months of this? Why didn’t I quit last year when I had the chance?’

I sipped champagne, went out for drinks, and spent three hours on a train staring into space, and by the time I went to bed that night all I wanted to do was cry. Cry because I’d just done the hardest thing I’d ever done in life…and it wasn’t over yet.

It’s a severe reaction. Most people are just happy to be done the really hard part of it. But, for me, doing amendments to my own work that were someone else’s idea of ‘correct’, was a lesson in sheer bloody determination. And the thought of graduating was the only thing that sustained me for the next 6 months. No, the amendments weren’t awful (most were really easy, and a few were really…well, anyways), but they were still things that had to be done, and they affected the whole thesis, so wording had to be changed, etc. That’s just as much work as editing your draft before submission is (maybe even more, depending on how good your draft was). I felt justified in my reaction, but I also felt horribly disappointed in myself that I wasn’t happier. That I couldn’t seem to get it through my head that I had a PhD. Because as far as I was concerned…I didn’t have a PhD. Not yet. And if I didn’t do the amendments in a much better way than I had – apparently – written my thesis, I would never have a PhD and 3.5 years would have been nothing but a waste of time.

So understand how you’ll react. Try to plan for it. For every eventuality. If you know you’ll react badly to amendments, decide how you’d rather spend your evening. If you know you’ll want to celebrate no matter the outcome, then plan a party. Have something that evening after the viva that you will enjoy, however the viva itself goes. And don’t feel you have to celebrate. If you don’t think you want to celebrate not-quite-but-almost-getting your PhD, then don’t. Even if others want you to.

It’s your day. You do whatever you need to to get through it. And survive tomorrow. Whether tomorrow is ‘I have a PHDdddddddd’ or ‘oh god, this list of amendments if four pages long’.

The Morning Of (the Viva)

The Viva is such a big part of the PhD process. If you are in the States, or in Europe and elsewhere, it may be different than the typical UK viva and I can therefore only speak to my own experiences. But having talked to PhDs from other countries, there are similarities in how your prepare and how you deal with the nerves.

If you missed the last post about preparing for the viva, see here.

I will do another post about the actual viva experience and, at a later date, about what happens after the viva (UK based), so stay tuned for those!

As I said, previously, I was very jet lagged when it came time for my viva. I hadn’t slept well in days and was still recovering from a trans-atlantic flight. If you can avoid that, best to do so (either avoid the need for a flight – i.e. already be in the country where your viva will be held, or come over extra early).

I woke up very early the day of my viva (a Friday). I already knew (again, don’t do this!) that as soon as my viva was over I had time for a quick (hopefully celebratory) drink and then an early train all the way back to the airport (3 hours). And then an early flight the next morning to get back to Toronto in time to attend my friend’s super important launch celebration. The kind of thing you don’t miss, if you are a best friend. It was just unfortunate timing, but I decided that as important as my viva was, my friend was just as important and missing her big event would be understandable bad.

So I got up that morning knowing I had a jam-packed 24 hours ahead of me, and the viva would only be part of that!

I had brought two outfits with me, because after much thought and contemplation, I couldn’t decide between the two of them. I still couldn’t decide that morning, but finally the fact that it was February and cold won out and I put on the pant suit. I thought it would make me more confident in a room full of men. Hard to say if that actually worked or not, but I hate wearing form-fitting dresses amongst men who I want to respect me for my intelligence. I figured a pant-suit would fit in better.

You can wear whatever you want, but be comfortable. You don’t want to have to worry if a part of your body you would rather not is showing or showing too much. You don’t want to be tugging at a skirt or constantly worried about sweat stains on a dress shirt (men, take note). If these are problems you have, dress with care, but keep it professional. You are there for your mind, not your appearance, but that doesn’t mean sweatsuits are acceptable. Dress as you would for a conference presentation.

I tried to eat breakfast – failed – and just moved on to redoing my hair umpteen times until I finally decided to just put it into a bun. I imagine men also have this problem, but it’s probably more about how spiky they should go with their fringe. Either way, if this passes the time and helps you cope, go for it.

My viva was at 2pm. That’s a long time to wait for something that terrifies you. And I knew I needed to eat something before then.

Right before lunch I headed to my department (where my viva was being held) and sequestered myself in my supervisor’s office, where he got me lunch, calmly talked to me about how bad the weather was, and tried to stop me from having a panic attack. None of it really worked, but bless him for trying. I would have been even more of a wreck left to my own devices.

Just before two, I was called into the viva.

Now, my department was pretty informal, so all vivas were held in the office of the internal examiner. And the examiner came to get you and took you to their office. Other schools have specific places on campus they do all vivas, and some you will not even have an internal from your own department. Make sure you understand ahead of time how the day will be run, where you should be (when you should be there), and what the general schedule will be (arrival time, viva time, viva length, waiting time for results). You don’t really want to be surprised about any of this.

That just leaves…the viva! Stay tuned.


After rather a lot of thought, I have decided to simplify things by posting new entries every Monday. At least until I run out of things to talk about.

If you are thinking of doing a PhD, or are currently doing one and you have a burning question you don’t think I’ve covered (or not in enough detail), please ask. Depending on what it is, I might not have an answer, but then again, I might!

Guest Post: Rachel Adams

One more guest post for you! I have such lovely colleagues and friends who are so very supportive of this blog, and so willing to share their own experiences with you.

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When Amy put a call out on a well-known social network for contributions to her blog, I was quick to offer a blog on the perspective of a distance learner PhD. It wasn’t long after I publicly declared that statement that I realised that what I could actually offer was ‘A’ perspective rather than ‘the’ definitive one. The truth of the matter is that for every person working towards a PhD; whether Full-Time, Part-Time, Distance learning or campus based, the journey is different and very much an individual one.

Another “truth” of my experience is that I am writing this at 02.00am in bed, while my husband and dog are snoring their heads off next to me. Since starting on my PhD journey, neither time or sleep has proven to be a friend of mine. I’m not really complaining because honestly a PhD has always been the dream that I never thought would happen for me…..it was too expensive, I am too “working-class” to be mingling in these classy circles (bear with! That’s my complex hang-up), I wasn’t academic or clever enough, What could I possibly say or contribute that would make any kind of difference?! Then there’s the torture of reacquainting yourself with your old friend Harvard Referencing. The journey is not an easy one.

But that’s the point! If it was easy, it wouldn’t be so damned worthwhile and whilst it feels a torturous process at times; the potential joy of overcoming that doctoral obstacle is something that keeps me going.

To provide a bit of background about myself, I work full-time as a Curator of a Military Museum and in June will have been in my current workplace for 7 years. This role sometimes feels anachronistic in that despite having been appointed to the role to use my museum experience to help the organisation I work for, the reality is that my museological knowledge is often overlooked as insignificant in comparison to the military values of those that I work alongside. In my workplace rank matters!

My PhD has already become my saving grace to some extent, as I discover the difference that my research has the potential to make. It has been a source of comfort for me to talk to colleagues from other organisations and realise that some of the “issues” I encounter in my daily working life exist elsewhere. It has also been a great confidence builder for me to know that there is a need for the focus that my PhD Research is beginning to take.

I did my Masters degree in 2000 and at the time was lucky enough to find employment just in time for graduation. Touch wood, I have managed to maintain this employment for some 16 years now, but let’s be honest…….the employment market in the museums sector is not great right now. Ideally, I could see myself teaching. I enjoy working with new talent, I relish seeing their enthusiasm. Realistically though, what are my chances of teaching? As a distance learner, one if the downsides is that my employment gets in the way of any opportunity for me to get involved in teaching within the department. That old saying of “the grass being greener on the other side” seems to resonate loudly. It’s a vicious circle….those in education are seeking employment, while those in employment long to be more firmly rooted within academia.

Still, I am left with no regrets at all. The PhD is more than just being a personal journey. To use a military analogy, it is another piece of armour that I wear to defend my professional position and hopefully maintain a career well into the future, because quite simply, if I did not work in heritage I would be at a loss as to fathom where to go from here.

This is England

I should start with a caveat.

I am Canadian (that’s not the caveat), but I did my PhD in England. As such, my experiences of a PhD are very much shaped by that country and its requirements. Doing a PhD in the UK is very different than in the USA or in Europe. In many ways, I think, it’s simpler, but in others it appears even more stressful.

I was also a full-time student. I worked during my PhD, but not regularly; instead I did short-term projects that took a few weeks to a few months and did not take up much of my time.

If you have specific questions about the requirements of your department, at your university, I am not the one to ask. Ask other students ahead of you, ask your department administrator, or ask your supervisor. These are NOT silly questions. These are important questions that your university will answer. Some departments will give you a handbook when you first start that will answer many pertinent questions. If you are lucky enough to receive one of these, read it well.

If you are not, there will always be students ahead of you in the process. And they will be more than happy to answer your questions, because at one point they asked the same of someone else.

If you would like to know about work/life balance, however, I can comment. I can’t comment on what it’s like to raise a family and do a PhD, or work full-time and do a PhD. But I did work, and there were weeks I worked quite a bit and ignored my thesis. And there were conferences to attend and admin work to sidetrack me. But beyond the work/life balance is a whole host of other issues that come with a PhD that are similar across the board, and I’m happy to share my thoughts with you. There are a few really good blogs in the Blog Links to sites for people who do work full-time and do a PhD, and also one that has a young family, so please do check these out.