Coping with a Chronic illness during a PhD by Lieselot Nguyen

I am 2 years and 11 months into my 4-year PhD. I was once told that a PhD could feel like running an obstacle course of a marathon distance, but I could say the same of figuring out and managing a chronic illness. It turns out I have had to do both in parallel. I had been experiencing health issues for 3 years before the symptoms worsened during the 2nd year of my PhD. This still impacts my life and ability to work today. In this post I will explain how I have tackled the challenges brought about by my health issues in relation to my studies. 

Image credit: @PhDCartoon

Getting the diagnosis

Getting a diagnosis was such a challenge. First, being an expat, I had no idea how to navigate the UK National Health Service (NHS). Second, the specialist doctors and my GP (primary care doctor) remained clueless for years, leading me to doubt myself often. Yes, you can have the imposter syndrome in your life as well as in academia. It got to the point that I felt my GP was not taking me seriously and so I decided to change to a different medical practice. It was a breakthrough moment when I just thought, “I don’t have time to waste trying to convince her. Let’s move on”. It was the best decision of my life. 

This new GP I was referred to quickly suspected endometriosis, attempted treatments and when they failed, swiftly referred me to a specialist. What if I failed to convince the gynaecologist? I would have to start all over again. I was dreading this appointment like I dreaded the interview that got me the PhD. So, I prepared it all the same: gathering data and presenting it so that patterns would be obvious to the audience. I came to the appointment with a detailed pain and symptom diary spanning over 2 months. The gynaecologist concluded that my symptoms were similar to endometriosis and fast-tracked me for a diagnosis and treatment laparoscopy. A few months later, I was firmly diagnosed and treated during this surgery and was given my first treatment in the hope it would help me manage the pain and slow the return of the illness. All of this happened whilst trying to manage my PhD. My physical and mental health were both affected, meaning that it was very difficult to carry on my research: chronic pain can be so debilitating it can be hard to carry out day to day life, let alone work. Before the diagnosis I had no proof that I was genuinely unwell and therefore doubted myself and my engagement in my research. After diagnosis I knew my health issues would likely affect me for life. This took and keeps taking a toll on my ability to conduct my research and drains my mind. 

My endometriosis diagnosis is likely to have long-term ramifications for my career in academia. For background, endometriosis is a chronic illness that impacts 1 in 10 women. On average, it takes 7.5 years to reach a diagnosis in the UK. “Endo” is difficult to diagnose because symptoms vary from one patient to the next and throughout their life. The causes are not yet known and there is no cure. Treatments include pain management and slowing the return of the worst symptoms that often require surgery. My diagnosis means I will suffer chronic pain and I may have to undergo several surgeries throughout my life. Treatments are often trial and error and require patience from both the overworked medical staff and the exhausted and emotional patients. Additionally, because it is related to menstruation and can affect fertility, it is a rather taboo subject. I was sort of prepared for this mentally, but it was still very difficult. This made it even more difficult to reach out and get additional the support that I needed.

An endometriosis diagnosis: The double-edged sword

After diagnosis, I first experienced relief: these invisible debilitating symptoms that were affecting me were not “in my head”. I had something going on that explained the chronic fatigue and pains that significantly reduced my productivity. It had nothing to do with how engaged I was in my research. It confirmed that my PhD was not making me depressed, as some had suggested! Yet, the diagnosis also meant that I will almost certainly have to cope with this chronic illness all my life.

I tried to focus on the positives: I was recovering well from the surgery and that meant I could complete my Professional Internship for PhD Students placement abroad. I felt lucky with the timing: I had finished an important part of an experiment against the odds before the surgery, recovered well, had great work experience at UNESCO Bangkok, and enjoyed amazing holidays. I came back and wrote and passed my MPhil to PhD upgrade. However, at this point, I almost crumbled. It was so hard to face how my health had impacted my ability to conduct my experiment and with every second of the write-up. Additionally, I started feeling ill again; endometriosis symptoms were not under control after all. I was even more unsettled as my main supervisor was leaving academia for good. And colleagues started raising their concerns about how stressed I was and questioned if I had trouble coping with stress. Someone even asked me if I should do this to myself considering the final write up would be worse. I know they meant well, but at this time all I needed was encouragement, not more self-doubt.

 I felt so misunderstood: it was not that I couldn’t cope with stress, it was that there had been a lot of stress and pain in a short amount of time, and people around me had no clue. I was so angry and stressed about this situation and my mental health deteriorated. The night before the viva, I was terrified that I would be grilled about why I did not achieve more.  So, I cried and promised myself that if I did not experience positive progress with my mental health one month after the upgrade report was submitted, I would have to consider quitting. Thankfully the upgrade viva went really well thanks to me knowing my experiments inside out, and to my assessors being so understanding about how my health had impacted me over the last year. One of them is still a great support to this date.

It was when I decided to apply for a retrospective extension for medical reasons to claim time lost while I was waiting for a diagnosis that my mental health was challenged again. I was told that even with a diagnosis for a fluctuating chronic illness, a retrospective extension for medical reasons could not be granted according to the rules and regulations of my university. It felt like I was being told that the impact of my health on my work wouldn’t be considered and I wouldn’t receive support to complete my PhD. Unfortunately, regardless of how hard it had been, getting a formal diagnosis was not enough to be supported. I still had to put up a fight, even though I didn’t have the energy. I realised how incredibly hard it was (both physically and psychologically) to be a full-time student, full time patient, and also spend time navigating administrative issues.

Denial, powering through and “failure”

In my country, we say that to learn something for good requires several attempts, like a nail needs more than one hammer stroke to be set in place. This was definitely true in my case. I put a lot of pressure on myself and tried to power through without paying attention to the ever-changing limits of my own body. 

First, my research had turned from a life goal to a distraction from pain. Without a clear diagnosis and pushed by the hope that I will soon be better, I clearly overdid it. Then, after the surgery, I hoped to have 2-5 years until the symptoms returned and was already focussing solely on completing my PhD. Clearly, I was trying to catch up but failing to carry on as “normal”. The hammer hit again when symptoms returned within 4 months and once again, I had no clue how long it would take for my condition to be manageable. This is when I fell into the abyss. Fluctuating chronic pain became a daily component of my life. Day and night. The only certainty I had was that how I would feel 10 minutes from now would be unpredictable. I didn’t dare to leave the house, let alone start experiments. Pain killers stopped working and at times the pain would be so strong I would faint. Total loss of control over my life triggered anxiety and lead me to total despair.

Everything seemed to be happening at once: my chronic illness, my PhD, family issues, and a global pandemic which made everything else much harder. Needless to say, my mental health was impacted as a result of everything that was going on. Whatever I was attempting cost a lot of energy and would not necessarily get me closer to a positive result. From swimming calmly, I started accelerating and soon every stroke became frantic. I was not going anywhere. I would have drifted and I don’t know what may have happened if it was not for my colleague L.C. who gently suggested that I may need professional support. It hurt. But it meant that there was a sore point to be worked on. I will always be grateful for her to have pointed me in the right direction. 

Acceptance and giving in, not giving up

My anxiety was so high that I did not even remember what it was like to not feel stressed, exhausted or both. Pain flareup kicked in and after a month of continuous physical pain, my mind started to give up too. I started having darker thoughts. That is when I realised, I was losing myself. I was no longer a happy and light-hearted person. Something had to change.

This left me without a choice: if I wanted to succeed, I should work with and around my fluctuating health and not against it. And this had to be the new normal from now on. Obviously, this was hard to accept, and I am still working on it. But I could not run away anymore; I had to solve this issue. I started thinking with this analogy: You start your run thinking you are going for a 10K, then learn that actually, you are running a marathon that ends up going through a maze. A wrong turn and the finish line gets further away. Taking time to think and walk for a bit is important: it will give me time to assess the situation properly instead of running around like a headless chicken.

I sought and got help from NHS wellbeing services. I started Cognitive Behavioural Therapy, took medical leave, read a book about how to manage chronic illness, reached out to other academics with a chronic illness on Twitter and other people with endometriosis on Facebook. It really helped me get my thoughts straight again. I learned to set my priorities right: my health always comes first. I learned to be entitled to feel how I feel, to live in the present, acknowledge my worries, act on the ones that could be solved, and let go of the ones that I could not control. I learned to make choices that benefit me rather than spreading myself too thin and working against myself. I am now swimming with the flow rather than against the currents.

My next challenge is to return to my studies after 4 months of medical leave. I am worried because I still have low energy levels, and this will probably impact my ability to enjoy my studies. But I know how to pace myself better, and I have supportive people around me. I am now registered as a disabled student and I am in the process of applying for Disabled Student Allowance to receive the appropriate support. It will be long, and it will be hard at times. But regardless of all that happened lately, I have made it so far. I may not be able to publish my research in journals but I can still try to complete my PhD. I will keep doing my best but my health is now my number one priority.

Communication as a coping strategy

In the process of managing my illness, I inevitably made a few mistakes. But one thing I did right was to communicate openly with my supervisory team from the start. As soon as I realised my health was impacting my ability to study, I told my primary supervisor that I was under medical investigation. I did it because he could sense that something was wrong, and I did not want him to think I hated my PhD when in fact it was the only thing getting me out of bed in the morning. It was the best thing I could ever have done. As time went by and symptoms and their negative impact progressed, I could no longer wait for a formal diagnosis to share with others. I was afraid this would be an awkward moment. Instead, opening up more to my colleagues and other supervisors brought only understanding and support. 

Communicating and reaching out even helped me distancing myself from my worries and joking about it. I love a good comedy, and sometimes situations were Monty Python-like when awkward becomes funny! 

One day I decided to confide in my supervisors. This involved discussing my symptoms with 4 middle-aged men and how they affected my ability to conduct my PhD. Awkward. I was pep talking myself before the meeting for reassurance. Saying things like: “I am the one going through this chronic pain. I am managing it every day, so surely they can listen for 30 mins”. Then, I realised I would have to talk about my uterus. Awkward. So I told myself: “They came out of one, If they can’t take discussing it, it is their problem, not mine”.

This meeting was awkward for a moment indeed, but it was mostly rather funny. Turns out all these taboos were in my head. This pep talk was only needed for me to dare to speak freely. My supervisors listened with respect when I described how my uterus was torturing me. They took me seriously and turned out to be very supportive.  What a relief. This event lead to a change of attitude: from feeling guilty to being empowered.

That’s when I understood that I am my own worst enemy. I learned that being in pain and not showing it took most of my energy and it was counterproductive for everybody. So, I completely changed strategy because I was safe to do so. Now when I am asked about my health, I am honest about it. I even discussed it during my slot at a lab meeting. In my opinion, it should be a safe space to discuss science but also how you feel about conducting your science. And if you have a condition that makes it hard for you to do your job, that should be the place to discuss it. It does not mean your colleagues can help you, but if you don’t tell then there is no chance at all. 

I cannot stress enough how wonderful it felt to have my team members’ and supervisor’s support and how lucky I am to be working with these amazing human beings. It is of the utmost importance that people work in an environment where they feel safe to reach out and empowered to speak out if necessary. Unfortunately, this is not always the case and something we need to work on to make academia more inclusive. And it is everybody’s duty to ensure that our workplaces function this way. Inclusivity is worth it for everybody and I know for a fact that it makes a great difference.

Lessons learned and advice

In summary, I have been struggling with my physical and mental health while coping with various family issues, a global pandemic and a PhD.  I’m sure many readers will identify with some, if not all of these. Here I have only elaborated on the effect of my chronic illness on my PhD, but obviously, everything is interlinked. I hope that sharing my experience is useful to others facing long-term life changes and their managers and supervisors trying to provide support. There are a few key messages that I would like to share:

There is no shame: Such is life: shit happens. It happened to me the same as it has or can happen to others. It’s tough but does not have to be taboo. One should not feel ashamed for being chronically ill or for facing difficulties. Your personal issues and your PhD solely do not define you. You are so much more than that, and you are enough. If others judge you and have an issue with it, it is their problem, not yours.

Accept and seek help: Denial is a coping mechanism that won’t help for long. Eventually, we have to face issues and there will never be a better time than when this coping mechanism stops working. Like in research, there is no point persevering in the wrong direction: we may find that a wall is waiting for us and we will run into it headfirst (again). It’s a limit that must be accepted, at least for now. When that has happened, the hardest part has already been achieved. If we reach a limitation, we can start looking for alternative ways to manage the situation and ask advice on new avenues to take. It’s likely there are unnoticed paths that may lead to progress.

Communicate and reach out: You are not alone. It may feel that way, but you’d be surprised how many people around you are struggling with similar issues and are willing to provide support. You won’t find out unless you start speaking about it. When you are ready to do so, it will help you to be able to relate to others and help others to relate to you and provide support. 

Baby steps: Learning and changing habits is difficult. That is why babies fall when they first start walking: they learn to transition from moving on all fours to standing. First, they don’t really control their moves, and rush and fall. Would you shout at a baby learning to walk when they fall? No, you would encourage them to find their balance and take baby steps. To walk before they run. The same goes for any human in transition. It takes patience, perseverance, courage, self-compassion, and support from others. 

You do you: All of what I wrote is either personal to me or only suggestions. Maybe none of it is useful to you, or only part of it. And that is ok. Sharing my experience, thoughts, and tips is only to offer a different perspective. What matters is that you do what is right for you.

You always come first: But one thing is for sure: your health must always come first. As far as we know, you only have this one body and mind. Treat them well at all times, the rest is a bonus.

Liesel Nguyen is a PhD Student in Evolutionary Biology. Liesel’s project involves understanding Evolutionary dynamics of glyphosate resistance using experimental evolution and a model species. By studying evolution in action, she hopes to provide useful insight to the scientific community tackling the issue of glyphosate resistance. She completed a MSc in Management and Evolution of Biodiversity and worked as a Lab technician. She has developed a chronic illness during her PhD and shares her experience on her blog. She has expertise in project management, knowledge exchange and communication and she is passionate about inclusivity.