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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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.

Guest Post: Living the dream

When I sent out a call to my fellow PhD colleagues to ask who might like to guest post, I got a great response! One of the many things I love about my continued involvement in the PhD community is how wonderful the current and former PhD students all are. And how supportive.

So here is another guest post, by a PhD student from Hungary, Pal Négyesi. Hopefully it will give you a different perspective from another country and from another background. As you know, we’re all different. But I also hope it’s inspiring as well.

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Five years ago I was a very happy small entrepreneur living in Hungary with a wife and one small kid (the 2nd one was under construction back then :)). I had various hobbies, including motoring history research. This topic led me to a lecturing job at a Hungarian University. And lecturing gave me such a rush, that I felt I found my second calling. I wanted to do this full-time. But I needed a PhD. Fast forward three years and in September, 2013 I started my PhD journey. I had no idea what I was getting myself into.

After writing around 200 articles both in Hungarian and English and actually having a book published in English a couple years ago I was confident in my language abilities. I was slightly worried about the museology aspect, but I thought, hey, I can learn – how bad can it be? As it turns out, real bad.

I was so very enthusiastic in 2013. When my topic was accepted by the School of Museum Studies I even applied to become a student blogger. You can read some of the stuff I am about tell you over there as well, but not everything 🙂

A couple months into the PhD and I realised I really, really have no clue about modern museology methods. I am interested in museums, especially motoring museums, but the theoretical background escaped me – until now. Though my supervisors are super friendly and supportive and I spent the first year of my studies just reading, I still felt like an imbecile. There were moments, weeks, when I said to myself: this is not going to work. What on Earth are you doing here? My so-called working environment was not really helpful either. I spent most of my days holed up in a small room on the 1st floor of the Kindergarten, which my children attended. It was very surreal reading about national identity theories, while small children played outside. And I had no one to talk to. Supervisions were like goalposts – even though I felt inadequate my supervisor was always positive and helpful.

And then three things happened during Summer, 2015:
– I passed my probation review
– Kindergarten ended so I could move back to my study in our house. At least this is a more familiar environment.
– and the inevitable: I had an epiphany and all the small puzzle pieces fell into place.

I am now a lot more confident. I know where my PhD is heading. I am doing my field studies – which proves to be tremendously exciting. I manage to balance my life as a father, as an organizer of a private tutorial group, as an enterpreneur, as a historian and as a PhD student.

I was 40-year-old when I started my PhD. My message to everybody out there: it is never too late to chase your dreams. It sounds very cliché, but it is true: believe in yourself and then you can do it!

Guest Post: Wasn’t ready for the real world

Dr Mona Al Ali is a dear friend and colleague. We graduated together in January and she was kind enough to offer to do a blog post about her experiences since finishing.

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While doing my PhD I was so much focused on finishing it that I totally got lost and forgot that there is a real world that I would need to live in after finishing. I already finished my PhD a few months ago; however, I am still lost and not sure where to be or what to do.

I was one of the few lucky PhD students who took a study leave from work. So I always knew that I’d have a secure job and I would not need to suffer trying to find a job or do a volunteer job till I could get a real job. However, after four years of studying I am not sure if I want to stay in the same job I left four years ago.

There is a period of uncertainty or a transformation period after the PhD. I hope it will not take more than a year, as there is a lot to accomplish especially where I come from. Living in United Arab Emirates is not easily. There is a huge pressure that you need to accomplish and do a lot. I had an interview a few months ago and they asked me if studying a PhD is my biggest accomplished. I was happy to say yes it was and I hope I can achieve more. Then I told them about my achievement of losing weight; as when I started PhD I was 103 Kg and now I am 70 Kg. They were so much more interested in hearing the story of me losing weight than my own research.

After finishing the PhD there is a lot of questions that would come to the person’s mind. One question would be, where next? Another question would be (if you are single), will it be difficult to find the right person now? Also, what do I really want now? All these questions will come at the same time and it might make you mentally exhausted thinking about them. However, you need to prioritize things and eliminate things that you do not have a hand in. You need to make an effort to reach the goals you want. Having a positive attitude is good, as it will attract positive energy and good things to you. Being negative will never help in any way. It will only make you stressed and will attract negative things.

I now know that the PhD is not a finish line. It is a beginning line for life and there are lot of things waiting for me. Having a support group and keeping in touch with the supervisor makes me feel safe and supported and I know I will find myself again.

Guest Post: Funding Nightmares

Kristy is a fellow PhD student (or I’m a fellow former PhD student). A few months ago I asked some of my colleagues if they wouldn’t mind writing about their own experiences with the PhD, or an aspect that they have found particularly difficult. Here is Kristy’s reply to that request:


Ever since a friend and colleague asked me to contribute to her blog, I have been thinking about appropriate topics. What words of wisdom could I offer you, the reader, about life as a PhD student. I thought about how to handle coursework, being a distance student means I have the freedom to… shall we say ignore (?) my homework until that email comes in that I’m due for a chat with my advisor. I thought about offering advice on choosing your program… after all that’s the number one question people ask me: “Why Leicester?” But none of those inspired me into a writing frenzy (although I feel that a caveat is necessary here… does anything spur a writing frenzy when you are mid-PhD?) so back to the drawing board I went. What I decided on for this post was a cautionary tale of how to approach funding your PhD.

Since I was a little girl I had planned on a PhD. I remember a conversation about how I wanted to be a doctor like my grandpa, but I didn’t want to go to medical school (keep reading and you’ll discover a bit of irony here). I wanted to be an archaeologist, share the stories of the past through the material culture of by-gone eras. Turns out you can be a doctor in just such a subject and without medical school! Well by nine I was sold on the idea, I didn’t care much for school but I was going to be a doctor someday no matter what it took. Fierce determination or a stubborn Scot, either way my mind was made up. By age 15 I had a part time job at a museum and was loving it. My 12 years (yes 12!!!) at the “Farm” (as we lovingly called our museum) gave me the solid foundation I needed to build my career. It was the best of all worlds, I could play dress up and pretend I lived in the 1880’s from 9 to 5 during the summer, I lead archaeological digs, summer camps, winter outreach programs and learned an insane amount of party tricks like putting up a tipi by myself and starting a fire with flint and steel. Not to mention I honed my ability to cook with fire so in the event of that forecasted Zombie Apocalypse, I’m set. Ah but I digress…

When I finished my BA in Anthropology I took over as site manager at the museum and discovered that there is a world of untapped programs and audiences for museums large and small. Over the past decade I have worked with community organizations and museums to build partnerships for audience development and inclusion. I mention this 1) because this idea of fostering community involvement in museums is really interesting and I’ll have to write about it later; and 2) It’s worth noting that I have worked in the museum sector since day one of my working life, I have little private industry experience and my bank account proves it (which causes sleepless nights when paying thousands in tuition bills every year).

Fast forward to 2012, I graduated with one of the first classes out of Johns Hopkins’ new Museum Studies MA Program. I could go on about this program but only 2 things are important now 1) it renewed my interest in academics … remember that dream to be a “doctor” and 2) it was a distance learning course, meaning I didn’t have to set foot on campus until I walked in graduation. But it was not a show up in your pjs and study part time type of course, this program does it’s university proud requiring all the rigors and discipline expected of any other JHU master program. I walked away with a passion for museums and creating spaces that inspired the same passion for all the visitors that walked through a museum. I waited almost a month after graduation before I started talking about PhD’s and what an acceptable topic of research would be. At the same time life surprised me in one of the best ways. While on a trip to Canada I met a funny and talented man who, it turns out, makes an amazing husband 😉   And here begins my story…

In 2013 my contract ended at the organization I had worked with for five years, I was sad to leave but excited to embark on some grand adventures. C and I had picked a wedding date and we decided I should immigrate to Canada, because we weren’t sure how long it would take to get my residency and find a job I also decided to apply for a PhD program. I had researched and researched what school would support my interests and agree to this radical new idea of “museum therapy” and settled on two. One a Museum Studies program at the University of Leicester and the other a Medical Humanities program at the University of Toronto (yes folks, the irony is I am actually working on building a bridge between medicine and museums, which requires me to spend lots of time working with patients in hospitals, Grandpa would be proud!).

By July 2014 I had moved to Toronto and received my acceptance packet for the University of Leicester. I was so excited to get started that I called just about everyone I knew and then quickly emailed the school back with my intention to start study in the fall term. Then the most horrible thing arrived in my mailbox: The Tuition Bill!

I remember someone once telling me that I needed to learn to dip my toes in the water instead of just jumping in. This would have been an instance where I should have dipped… or at least researched the commitment I was about to make. But alas, I had assumed that this program would work like my masters program (as this too would be distance learning so that I could stay in Toronto), and didn’t put too much thought into funding. After all I had received student loans with a very acceptable interest rate which I paid off early and was sure that it would be a matter of weeks before a museum in Toronto reviewed my CV and would offer me a job.

Nothing could have been further from that dream if I had tried to make it so. Two years into my program I’m self-employed and am taking odd contracts for cultural institutions, as a new resident in a foreign country I am not eligible for tuition loans (actually I was not eligible to open a bank account or even a credit card until I had my first paycheck), nor does the school I chose to attend recognize or accommodate the loans I applied for through the US Department of Education. In a few short months I learned that although the school was overjoyed with what I could bring to their long list of accomplishments, I was not actually going to get any financial support from the institution… not even the confirmations of enrolment required for my US loans. This left me devastated and with a bright red account balance. I thought about quitting… I still think about quitting when I lay awake at nights wondering where I’m going to get my next paycheck. But I won’t, I can’t, it may sound cliché but I have come too far. Last fall I got a punch to the gut. The school was going to suspend my studies because of an outstanding balance (a minimal outstanding balance, mind you), and after six months of emails with a paper trail of appeals for help that would probably go to the moon and back, I was not further along than when I first asked for help in finding a funding solution. That’s when my motivation took over; I was not going to let this institution take an opportunity away from me, one that I worked so hard to get. I picked up odd jobs, and am still working odd jobs to keep the finance office off my back. It’s stressful, depressing, and fully affecting my ability to study, but I’m determined to keep going because there is a larger community at stake. My patients, and all the patients in the future that will experience the joys of museums and the memories they inspire need me to finish my research. I have learned to accept that I am now in a unique situation, but I hope I’m not alone.

**we should take a moment to breathe**

This experience has opened my eyes to the stories I’ve heard from others, but just couldn’t believe, how could a school not take the time to support its student body, especially the graduate students that are forging their careers and will carry their alma mater with them on their professional journeys?   I don’t have an answer but I do have words of encouragement. It’s worth it… all the blood, sweat, and tears… they are worth it. When you get to write and research about what you are passionate about, it’s worth it. When you walk into a patient’s room or a memory care ward and you get to discuss a museum, an exhibit, or an artifact and see their face light up, it’s worth it. These raging whirlwinds of ups and downs are all worth it. In the end, like many of you reading this, I will be a doctor. I will have created a foundation for hospitals and museums to use to bridge the gap between health care and museums. I will help patients and their families create memories and positive health care experiences. In the end I know I am already making a difference in my community, I see it every day.