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.

Support Systems

Tell me if this sounds familiar.

It’s been a bad month. Your research/field work isn’t going well. You have started to wonder if you’re on the wrong track. Maybe you worry your research question is the wrong one. Or that your methodology doesn’t support it. You feel overwhelmed by the amount of work you need to get done before your next advisor/supervision meeting. You feel stressed and anxious. You aren’t sleeping well. You routinely procrastinate or overwork (or both). You cancel plans with friends because ‘you don’t have time’, but you still aren’t making progress.

But hey, you tell yourself that it’s all part of doing a PhD. That everyone goes through this. Or you tell yourself that it’s just one more reason you aren’t cut out for this. That you should just quit. It’ll be better for everyone.

You know something is wrong, but you can’t quite figure out exactly what that is. But you’re embarrassed to talk to your coworkers, or feel that you’ve complained too much to your friends already. Or you worry what your parents will say if you admit to them that you think this is just too hard.

First, forget about other people. Their opinions in this are not what your focus should be. This is about you. This is a time you get to be completely and utterly selfish. If something feels wrong, it feels wrong to you. And to change things means making it feel right to you.

If your family won’t support you, turn to your friends. If your friends don’t understand you (and refuse to try), I’d suggest some new friends. If your coworkers won’t listen to you, go to your advisor. If your advisor won’t listen to you, try your university’s counselling services. And if they don’t have time for you, go to a health care professional and tell them you need to speak to a professional. Someone WILL listen to you.

Being overwhelmed, stressed, anxious, and feeling like it’s all too much are not just ‘part of the PhD’. And they do not mean you aren’t good enough to do a PhD. They are part of it because almost everyone experiences this, but they don’t need to. It’s not a requirement to get your doctorate, and don’t let anyone tell you otherwise. This isn’t about ‘if you bleed enough, you’ll get your degree’. People can do a PhD without having breakdowns. Without feeling like they aren’t worthy. But I will say that those people are fewer by the year.

If you’re in the majority that are struggling, it’s okay; you are by no means alone. But you need to have a support system around you to deal with these struggles when they happen. It’s best to have this system in place when you start your doctorate.

Get your family on board. Make sure they support you from the get-go. Make sure they know how hard this is going to be; that you are going to miss family parties, that you are going to miss seeing your family when you have a deadline, that you aren’t always going to call every Monday, etc. Whatever you normally do with your family, both those you live with and those you don’t, make sure they know that there will be times that that ‘normal’ won’t work for you. Don’t apologise for this, but make them aware. Most families won’t go ‘but we come first’; but if they are suddenly confronted with you having to miss your mother’s 60th birthday party because your advisor set you a deadline in two day’s time, they might not understand. So warn them ahead of time.

Get your friends on board. Your close friends, the rest of them aren’t really going to be very useful. They are going to be the sort of people who check in in two years’ time and go ‘aren’t you done that thing yet?’ But your close friends have likely already seen you at your worst. They have been through the trenches with you. They can go through them again. And you want people who are not PhD students. You want people who have other interests and other hobbies, so when you talk to them you can have a break. But you want friends that can be shoulders to cry on, comfort on the bad days, reason and sanity when you feel you are losing both. They don’t have to understand the details, they just have to be willing to be there for you.

When you start your PhD, learn whether your advisor will be a support person. Some advisors are great at this. Some of them suck at it. Figure it out early on, by talking to other students, by talking to your advisor, etc. whether they can be there for you or not. If they cannot, you know to look elsewhere when the going gets tough.

Find coworkers. Colleagues. Other PhD students. In or outside your department. These people will understand you perfectly. Sometimes, they may not be able to be there for you, if they are having a hard time themselves. So find several people that fall under this category, to ensure that there will be someone who can listen/help/advise when you need it.

Discover who at your university does counselling services. Every university offers this in some way, whether formal or informal. Know where to go before you ever have to go. And never, ever, be ashamed to use these services. They are there for a reason. Sometimes, talking to a stranger is easier than talking to a friend.

A PhD is exhausting. Physically, mentally, emotionally. It’s not easy for anyone. And, at least for everyone I know, there are times when doing your PhD is all the energy you have. There isn’t any left. These are the times you need other people. You need someone to help, someone to give you energy.

If you are having a day, a week, a month (a year) where it is all too much, for whatever reason, go to your support network. Go to your family, your best friend, your advisor, a coworker, your university. Know that there are people who will listen and there are people who will help.

We Interrupt This Program

Owing to the fact that I’ve not been on holidays (at all – usually I work 6-7 days a week on various projects) I will be away this week on a technology-free vacation. Alas, my schedule did not allow time for me to draft a blog post for you and schedule it for posting ahead of time. These things happen, and as PhD students (or potential students, or former students) I’ve no doubt you understand.

Hopefully there will be a blog post for September 12th. I say hopefully, as I am not back until the 10th and have a near whole-day event the 11th. But one tries one’s best.

Mondays

It’s Monday, and I owe you a blog post.

Alas, it has been a rollercoaster for the last ten days and my emotions are simmering at interesting levels (either boil or off). It makes concentration rather difficult. In an effort to take some time, I ran off to a campground for a couple of days and managed to exhaust myself so much I’m still barely able to stay awake and I’ve been back for 24 hours (and slept for 9). Sometimes ‘getting away’ doesn’t always have the affect you hoped.

But I need to write something, and what better to write about (instead of the post on methodologies) than what to do when Real Life interferes with your PhD.

First, it’s okay to stop. Stop whatever you are doing and access the situation. Is the interruption something that will be a few days long? Or is it something that might seriously undermine the next year or more of your PhD? (Sick parent, pregnancy, severe illness, etc). How long the interruption will be has a big effect on how you should deal with that interruption.

I know people who seem – for some reason beyond comprehension – to believe that if they do not work every single weekday of their PhD life they are doing it wrong. I think we’ve had a lengthy conversation about work schedules already (see here and here), so please believe me when I say that if Real Life interferes for a week or two, just let it. Go deal with your RL issue and then get back to your PhD when you’re in the right frame of mind. A couple of weeks are not going to break you (or your thesis). And if it happens right before a deadline, immediately have a conversation with the people who set the deadline about changing it/moving it. Everyone in academia understands that there can be things that will interrupt research, but unless you are open about it, people are going to assume everything is fine.

If the break needs to be longer (for instance, if you were diagnosed with an illness that needed treatment or surgery), then be very upfront about this with your advisors. Talk to people. Tell them what is happening, what the expected outcome is, how long it might last. It is probably best to take either sick leave (if that’s an option for you) or a sabbatical (which will be an option if you’ve never taken one before). If you are a foreign student in a country, then you need to think about visa issues. Likely, you’ll have to return home because many countries don’t want you to stay if you aren’t a full-time current student, and sabbaticals mean you aren’t technically a student – but taking a break from being a student. Keep this in mind, but if this is the only reason you can’t take a sabbatical, you probably need to access how much time you are going to be away from your PhD. A couple of weeks is fine, a couple of months is going to be problematic. But don’t let that stop you taking the time. For whatever reason you need it.

I know people who have had to take time away, and they worry about ‘getting back to it’. If you are passionate enough to want to do a PhD, you’ll find that passion again, even after a time away. And, in fact, time away may actually help. As I’ve said, I took a short sabbatical from my own work, and it’s the only reason I was able to come back and finish the thesis. I needed that break for mental health reasons.

But whatever part of RL that interferes with your PhD, it’s all right. It happens. You aren’t a failure. You aren’t bad at this. You aren’t a sorry excuse for a PhD student. RL happens. We like to think it doesn’t, because we like to think that academia is RL for us, but being a student puts you slightly outside of the norm, and things do interfere with being a student in a different way than they would if – for instance – you were full-time employed as a professor. Then you can take grievance absences, sick days, sabbaticals, and it’s sanctioned. As PhDs, you fall somewhere outside this spectrum, and you have to realise that although that doesn’t mean you aren’t entitled to the same sort of thing, you might have to come about it in a different way (take a break from your PhD, instead of a sabbatical, for example).

But a sick mother, or an illness of your own, or the death of a loved one back home are the most important thing. The PhD should come second when these things happen. Just like work would come second.

I am reminding myself of this because I have done absolutely no work in the last 10 days. And that’s okay. I feel guilty because it’s a default reaction, not because I actually should feel bad. I shouldn’t. I’m taking the time I need to and I’ll get back to work as soon as possible.

Curation

Curation, or the act of curating, is defined as the organisation and maintaining of a collection of artworks or artefacts. Content curation, on the other hand is the process of analysing and sorting Web content and presenting it in a meaningful and organised way around a specific theme.

Having defined those terms, I’ve spent the last week ‘curating’ a twitter account. Which means mostly content curation, obviously, since it’s a Twitter account.

It was interesting and informative. The best part about the @wethehumanities account is that it encompasses all humanities. So the people that follow it can be from any field (and even some outside humanities that do multi-disciplinary work). It makes a unique pool of academics, researchers, and professionals to talk to.

The entire point of the curation week is to share your own research, communicate with others with shared interests, and engage in conversations with people who don’t necessarily share your interests specifically, but are proponents of humanities as a discipline.

We covered everything from social media addiction to off-screen time, digital literacy, museum text panels, digital design and don’t touch policies. And a lot of other things in between.

I wasn’t certain about signing up to curate, but a colleague suggested it. I thought well ‘try something you aren’t sure you can do’ is always a good learning experience. I think it was (mostly) a success and I learned about other people’s viewpoints, and some facts I didn’t know.

I tried a lot of things during my PhD I had never done or that outright made me anxious (ex. public speaking), and every experience was a learning opportunity. I was a student and it seemed to be part of the experience. Now that I’m not a student, I find I more readily say ‘no’ to things. For one, there is no pressure to say yes. But for another, it’s easier to say no. And that means I’m missing out on experiences and opportunities.

So this time, I said yes, and I’m glad I did.

Transitioning

If you haven’t discovered, or aren’t following From PhD to Life, please stop reading this post and go there immediately. It’s hard to imagine that one single blog/person could put me on the right path, but Jennifer has, without even realising it. She has because she did it herself. She managed to transition and make a career and she did it simply by perseverance.

It’s a hard thing, to transition. You’ve been in academic for 3 years, at least, if you’re full-time PhD in the UK, but probably you’ve been in it longer. You’ve probably got an MA under your belt too. How do you leave it all? First, you decide if you need to. Maybe you don’t. Maybe you can make a career of the academic thing. If so, I wish you all the very best in the years ahead and I hope it is as wonderful in ten years as it is now (or more wonderful!)

If you’re already contemplating leaving academia, you’ll need to transition out of it. If you’ve had a professional job already in your field, it’ll be that much easier to transition back to it after you leave the academy, even if it isn’t the same job.

But for a large number of PhD graduates, the transition is new and absolutely terrifying. It’s so terrifying, I’ve basically been a deer in headlights for the last year and a half. And I’m tired of being frozen. And just like when I reached that ‘I’m over it’ moment of my PhD, and found the drive to finish, I’ve reached that ‘I’m over’ being scared part of transitioning. I just want to get on with it now. Despite the hard work. Despite the pain. Despite the uncertainty. I want to make this work. I want to transition fully.

[I’m trying really hard not to make Agents of S.H.I.E.L.D. references guys, I really am.]

But how to transition? Baby steps. How did you learn to do anything in life? One step at a time; and if those steps are small, even better, because that will make them more doable.

Are you transitioning to freelance? To a full-time job? To a related aspect of academia? Figure out your path first. What is it you ultimately want to be doing? Than figure out how you think you can get there. That might not be your path, but it’s a place to start. If you can find people who have transitioned on a similar path, all the better, because they can tell you what worked and didn’t work for them. That isn’t a sudden roadmap to your future, but it’s good information to have, because it might be the path you end up taking yourself. And if it’s not, it’s good to know other people have forged their own way and made it.

You don’t have to have lofty goals. You don’t have to have a dream job in mind, but you need to figure out what will make you happy and safe. And that’s hard. Man, is it hard. But trust me, the day will come that you figure it out. And don’t be too worried about how far off that day is either.

People will constantly pressure you while you are transitioning to try things. To figure things out. To know things. But transitioning is about learning. It’s about steps. You can’t see the future anymore than the person asking those annoying questions can. So don’t bother answering. You’ll figure it out as you go, most of the time at least. And that’s okay. That’s life. We never have all the answers.

But have a direction, that’s all I’m saying. Have a goal, even if that’s just one goal of many to come. And go after it. Make it happen. But know that sometimes, it really does take that ‘I’m over it’ moment. And if that’s what it takes, and if this is the direction you really want to go, you’ll get there. On no one’s timeline but your own.

And that, really, is the road to happiness.

Post-Graduation

This strange and bizarre reality happens after you graduate. You’re done. DONE. It’s all over. They can’t take it away from you now (I tell myself this because the alternative is unthinkable). You are a PhD and you have a piece of paper and a hat (if you bought it) to prove it.

You are not, absolutely not, a student anymore. And herein lies the crux of the matter. Because no matter how bad it got during my PhD and no matter how many times I thought ‘the real world must be better than this’ I knew otherwise. I knew I had it good. And I miss it. And not with rose-tinted glasses either; I just plain miss all of it, and that includes the stress. At least I had something concrete to be stressed about.

Now I just stress about life in general.

But it’s a strange place to be, post-graduation. You are done. Many of your colleagues are probably finished too. You have other friends still doing it and now you are cheering them on from the ‘I finished – so can you!’ perspective. And you are either a) unemployed or b) lucky. If you are B, congrats, I’m exceedingly happy for you. If you’re A, you are probably also thinking ‘Maybe my PhD wasn’t so bad…’

Let me tell you, it wasn’t. Oh, trust me, I had months it was the Worst Thing I Have Ever Decided to Do and I regretted all my life choices. But now, on the flip side, and definitely in the A category, being a miserable PhD student is still better than being an unemployed PhD. Because at least I have something concrete to focus on: finish the PhD. Now my concrete has become the mythical: get a job. Because when people ask you ‘what do you do?’ you get to answer ‘I’m a PhD student!’ and they get excited. Now I answer ‘I’m working on a variety of things’ by which I mean job searching and making no money off trying to freelance. Generally, people get the message and stop asking. Some don’t. Then I come up with really impressive words for what I kind-of-sort-of-don’t-really-do. And they lose interest.

But hey, I have a PhD. A a LOT of people in the last months have said some version of ‘congratulations, that’s amazing’. And yes, that feels nice. For about .5 milliseconds until your brain reminds you that ‘yes, PhD: UNEMPLOYED’. But it’s weird, this post-graduation thing, because everyone around you who has not done a PhD thinks you have done the most amazing thing ever [WHICH YOU HAVE. Let me be clear, YOU HAVE.] And in your head, if you are the A person, all you hear is ‘if you can do that, why can’t you find a job?’ Because that’s what you ask yourself every single day.

If I did my PhD, and I have a shiny piece of paper to prove it, why am I still struggling with everything else in life?

Because. I promise you, others who have not done PhDs are struggling with life, and they don’t have a PhD on their wall to slightly console themselves with. But yes, most days, looking at that piece of paper fills me with no emotion whatsoever, except failure. Because yes, a PhD is a massive accomplishment, but if that’s all I do with the entire rest of my life….I’m going to have a problem.

So, things are changing. And this post is the first public step in that change. If academia is out (it is), and if no museum in this country wants to employ a PhD (or so it seems), then that leaves only one place to go.

I have always found it best to be my own boss. Hello consulting*, how are you?

*posts galore on this step-by-step process to come. And if you haven’t check out From PhD to Life yet, head right here. Because that’s been my biggest inspiration these last weeks, and if so many other people can do it, so can I.

A Deviation

Though the remit of this blog is to discuss issues surrounding being a PhD student (and by extension, what comes after you graduate), that does not mean I’m not willing to deviate a little.

If you are one of the lucky ones who found decent employment after (or even before) graduating, then congratulations.

If, more likely, you have not, or worry you will not, I hope this post appeals to you, at least to give you something to think about.

I have been unemployed for a year now. That is since my last job in my field. I have worked two jobs during that time, but neither are the sort of thing I’d brag about on my CV and neither took much more brain power than a high school student would need. I disliked them both and worked them only for the money involved.

I only graduated in August, according to my university, so in their minds I have only been unemployed for three months now. Which is definitely a more optimistic way of looking at things. However, on the flip side, it means I’m facing a year OR MORE of looking for a position that remotely makes use of my education, as opposed to my ability to smile at customers even while they are frustrating me. A good skill to have, but not what one goes to university for 10 years to develop.

I acknowledge the job sector is hard. I acknowledge that I know intelligent people who have done wonderful things, but have so far been unable to find a stable job in their field (or, in some cases, any job in their field). That is not how the world should work, but it’s how it currently does, and may for many decades to come.

But I’ve given up bemoaning this fact. I have given up being angry when people ask me ‘so, found a job yet?’ as if it’s that simple. I have given up struggling with whether to take the retail job to make money, knowing it will leave me less time to pursue employment in my field. I have, in other words, given up worrying about anything that does not further my ends of being a professional.

And that was my choice to make. It’s not an easy one, and for some people it may be an impossible one. It means I’ve made sacrifices. I live with my parents to save on rent. I spend almost no money on anything, even when I need something. It means a lot of pressure and stress knowing I have to develop a good career at some point, and that because that career will start later than most people’s, that will effect the rest of my life, not to mention my retirement. But I didn’t pick a PhD because it was easy, and I hardly picked museums because I thought it would be a relaxing career path. I picked it because, to me, there was no other choice to be made.

My that doesn’t mean I sit around all day and job search. There are certain things about doing a research degree that are wonderful. And other things that are not. And having very little time to pursue other possibilities or interests is one of the main things I missed the most while doing my PhD. But I have all the time in the world to do them now. So I’m writing novels again (right now, two at once). I’m looking into agents and publishing opportunities. I’m painting again. I’m handwriting again (a lost art in a world of online communication). I’m taking simple joys in decorating for Christmas and finding the perfect gifts for people I haven’t been able to shop for for years and that I can give to them in person. And a lack of money doesn’t stop me from doing any of those things.

And next year? Next year I’m going to travel. There are limitations to what you can do when you work full-time, and I will never, ever let that stop me from seeing the world. But since I have a pretty good chance of being unemployed for another twelve months, at the very least, I am going to travel when I can, particularly doing such trips as a full-time job would not afford me the opportunity to do. And yes, it may seem like I am spending money on frivolous things. But travel is never frivolous if you do it right. It shows you more of the world. It allows you to meet people you would never otherwise have met. To experience a new culture. To open your eyes and develop you as a person. Travel is a necessity of life, for me, as much as a roof over my head or food in my belly. As much as air to breath. I am always most happy when I’m travelling.

So, writing, reading, painting, travelling, thinking, and a dozen other things I’ve been wanting to do. And these days? I’m not feeling guilty about any of it. And that is the biggest change from my PhD.