Adjusting to (Academic) Life with a Chronic Illness by Stephanie Zihms

First up – I have never been one to play along in the competitiveness of academia.  Maybe this is because I worked in industry before starting my PhD, or maybe it’s because I enjoy my spare time. Who knows? I want to start by saying that adjustments for me weren’t around cutting hours or starting to not work on weekends, as I already did that before my diagnosis.

Before my diagnosis

After my PhD (which I completed in 2013) I moved to England to start an open-ended position as a research geoscientist at the British Geological Society. But after 14 months I decided that it wasn’t quite the right fit and I moved back into academia as a postdoc. I joined Heriot-Watt University – first on a 3-month contract trying to validate models with some lab data and then I secured a 3-year postdoc in the geomechanics group. Three years seemed long enough to figure out what I wanted to do career-wise and start laying some foundations. Little did I know that life would throw me a massive curve ball a few years later.

First I started experiencing some minor symptoms that I couldn’t quite figure out and put down to stress like tingly fingers and arms and blurry vision in one eye.  Initially the GP thought it was carpel tunnel because of the tingly arms, but after the blurry vision, which turned out to be optic neuritis, it set off some alarm bells. I was suddenly being tested not only for carpel tunnel by also for Multiple Sclerosis (MS), just to be safe. The waiting time between appointments and results was the worst. I oscillated from wanting to know everything about MS, scouring online support groups to not wanting to be a worst-case scenario person who was overreacting. The uncertainty was hard, and I didn’t know where to go for help or what to get help for. This was not helped by comments from neurologists regarding my tests for MS who hinted at me that I didn’t seem like I would have MS. I wish the neurologist had told me then that MS was not their speciality and that I just didn’t fit into their understanding of what MS looks like.

Looking back, I now know with hindsight that I was in a high functioning depressive phase and help would have been available – from my institution or my GP – but I was in denial about how bad my mental health was, and I bought into the fear that I was making a fuss over nothing and would waste people’s time.

Getting the diagnosis

On the 18th November 2016, a Friday afternoon and one of my best friend’s birthdays, I was told by the neurologist that it turns out I did indeed have MS and that they didn’t really know much about the condition so I would be transferred to see a different specialist.  They also added with Christmas coming up I shouldn’t expect to be seen until Christmas. Ok – Bye! The initial reaction was shock and I cried for a good 20 minutes in the car, followed by anger since they never told me to bring anyone (normally a sign of bad news) and never checked if/how I would get home. I was also not offered any support materials or a helpline to call, just given the news and left to cope on my own. Luckily, I remembered my Google searches over the summer and the networks that looked promising – I joined Shift.MS and Chronically Academic straight away. To this day these are my two go-to support networks when it comes to living and working with MS.

After the initial shock I went into researcher mode – now I knew I had a legitimate reason to be delving deep into understanding MS. I read a lot of research papers and made some drastic diet decisions; in hindsight, these were all coping mechanisms and it worked for a while. At work, I told HR quite quickly because I wanted the protection of them knowing in case things became worse and I needed adjustments beyond the flexibilities of a postdoc position. I wasn’t one for hiding it – but I totally understand why people don’t want to share something like this, especially in academia. After meeting with my MS neurologist in January 2017 I felt a bit better as they could paint a better picture of what to expect and provide treatment options and further support. It also helped that we got on very well from the start and I’m still in their care even though I moved again.

Initially I didn’t really change much when it comes to work routine – I was driving to work so had adjusted my hours to avoid traffic and things kind of went on as normal. I was excited about a research exchange with a Brazilian postdoc and just wanted to get on with stuff. I seemed to be managing okay. Was I though? A fieldtrip in mid-February changed that drastically. It was a great sunny but cold day out.  Tiago, my research exchange visitor, loved the site and overall it was a great day. While driving home something didn’t feel right, but I wasn’t quite sure what was wrong. The next morning, I couldn’t get out of bed due to severe fatigue. I have never felt so helpless – how did this happen and what did this mean?

At the point, the months of telling myself that things would be ok and saying “I’m doing fine” etc. crumbled up and left me with some overwhelming emotions. Luckily, I remembered that HR offered me support months ago so I asked for it.

This support came in the form of 6 counselling sessions and I got to see someone the following day. I had never been to counselling and wasn’t quite sure what to expect. The six sessions were amazing – it was so freeing to talk to someone who didn’t know me and, in a way, didn’t care what I said.

And I didn’t have to worry if I was saying the right thing or upsetting them (even though my counsellor cried quite a bit during the first two sessions). I was a little annoyed that I didn’t know about this when I was going through my diagnosis phase, as counselling during this time would have been so helpful. At the same time, I also attended a “Living Well with MS” course being piloted by the MS Society Scotland. The timing of this was great as well, and it was also the first time I met people who just understood what I was going through. The tips and tools I got from this course have helped me a lot.

2020 – what has changed?

Looking back, I’m quite proud of the things I have done since my diagnosis and how I have adapted with the help of others. Asking for help is still hard but I’m a lot better at sharing the ups and downs openly and this has really helped me to connect with others in a positive way. My MS diagnosis also inspired my career change in 2018. I just wasn’t happy in the group I had joined in 2017 for a third postdoc, and the lack of willingness to learn about accessibility and adjustments combined with a lack of empathy made it very difficult. This was not only around MS but other issues as well. Being told that my MS was my problem didn’t make for a good start. This experience combined with the shear enormity of adjusting to a new life with a chronic unpredictable illness led me to do a proper re-evaluation of my values and my goals. After attending a Career Management course and having the opportunity to learn about some tools I knew that I wanted to change careers and move into researcher development. I had done a whole lot of other things since 2016 to help me build the skills and experience to make this career change.

My new role is fantastic, and I enjoy working with researchers a lot. Also, my team are super supportive and always keen to find out more about my MS, how they can support me and how they can be allies. It is so refreshing. I still haven’t done any major adjustments (I talk about Lockdown in a bit) to my work week, but I have the flexibility to take time off at short notice or work from home if travelling isn’t safe e.g., due to dizziness. I have made changes to other aspects of my life to keep working full-time. In January 2018 I started medication to help me manage my MS better (I could have started earlier but I wanted to go to Brazil for my research exchange first). I started running and still keep to a somewhat strict diet. I also still keep my bullet journal – which I started in 2016 while going through the uncertainty of a diagnosis, and I learned to prioritise myself and my health as well as  self-care which has become a big part of my routine.

Some tips for adjusting to a chronic illness diagnosis in academia

Based on my experience with MS diagnosis during my postdoc, here are some tips for coping with chronic illness and the upheaval that brings:

Ask what support is available: You might not need this now but knowing where to go or having met the people beforehand will make it a lot easier to ask help when you need it. And you can then also signpost this to others who might need help.  If you’re a postdoc you will very likely have to access help via HR and that can be quite scary.

Join a Union: I joined University and College Union (UCU) after something went wrong. Their support has been great and it’s a relief to know that someone can take up difficult conversations on my behalf.

Learn what contingency plans work for you: My manager knows that my MS can be unpredictable, and I might need to take time off or work from home at short notice. We agreed that this is fine as long as I can manage my deadlines. So I try and manage my workload accordingly and sometimes that means working later due to a nap break or squeezing an hour of work into the weekend. That’s where the flexibility of academia has been quite helpful.

Make time for self-care: Self-care means different things to different people. For me it’s time to go running or sticking to my morning routine. During lockdown I have been for a walk every morning and I make sure that I have it on my to-do list for the day. Schedule time into your calendar to make sure you take time for yourself. 

Redefine what success means: We can get dragged into the productivity = success debate in academia and before you know it you’re bragging about how many hours you “work.” To me success now means being happy with my job and proud of what I do. I have a happy folder where I keep e-mails people send me when they say thank you.

Some final thoughts

I always wondered if I could keep working full-time in my role if my MS would, for example, stop me from travelling – but I didn’t want to ask anyone in case it would be used against me. So, when lockdown due to COVID-19 happened, I got my answer and a trial run. I know this time has been tough for a lot of people and I don’t want to take away from anyone’s experience. I’m in a very privileged position but being able to test how working from home would work for me and proving to others that it is possible gives me some hope that I can keep working even if MS throws another curve ball.

The key outcome for me has been the ability to properly adapt my working from home routine. With my previous adjustment of one day per week from home I never managed to settle into a routine. Together with my team I’m testing and getting to know technology better and it can help us work as a team. I also have more flexibility in my day and can take breaks more easily and frequently without having to worry what it might look like to others. The university doesn’t have appropriate resting spaces and I often end up leaving early on these days.

Going forward I hope that employers see the benefits of flexible working and keep adjustments in place to allow people to stay in work or even re-join the workforce as we move away from presenteeism in the workspace.  I also hope that people now understand the meaning and existence of (reasonable) adjustments as a necessity to level the playing field and not favour only a select few.

Stephanie Zihms

Dr Stephanie Zihms is a lecturer in Researcher Development at The University of the West of Scotland and responsible for the design, evaluation and promotion of research enhancement opportunities. She is interested in Academic Writing and co-hosts the Power Hour of Writing and runs a Write-along workshop supporting researchers with their journal papers. Another research interest is the role of public engagement in linking research and teaching in Higher Education, a topic a PhD candidate will be investigating from October 2020. Stephanie has her own personal blog or you can follow her on Twitter @GeomechSteph

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