My journey with Irritable Bowel Syndrome

Coping with a debilitating chronic condition in academia

April was Irritable Bowel Syndrome (IBS) Awareness Month, which encouraged me to write those lines and share my journey in academia with a diagnosis of a chronic medical condition.

IBS is a chronic disorder that affects the large intestine and leads to a large diversity of symptoms including abdominal pain, cramping, bloating, gas, as well as diarrhea and/or constipation. It is a common disorder, which affects ca. 10-15% of the population, and is often considered debilitating as it can be associated with a poor quality of life – especially in patients with moderate-to-severe IBS.

I have been diagnosed with severe IBS almost a decade ago. I have spent more than half of my life struggling with gastrointestinal issues, with unexplained symptoms and uncontrollable abdominal pain. I do not count the number of medical investigations I went through to find the cause of these symptoms. Getting this diagnosis was not the relieve I was hoping for. IBS is a complex chronic condition that is very challenging to control, for which no real therapy exists, and which is often associated with psychological disorders including depression and anxiety. It is a nasty condition since the whole array of symptoms can be triggered by multiple stimuli, including food, stress, anxiety, or lack of sleep.

Indeed, I do not count the number of sleepless nights I had due to this uncontrollable dull pain and the number of days I suffered from severe diarrhea without any reason. I do not count the number of days I felt hopeless that I would never figure out what actually triggers these symptoms and how I can handle them. I do not count the number of times I had to cancel social encounters because I was too exhausted – physically and mentally – after an IBS event.

IBS makes my body weak and has a deleterious influence on my immune system. I am more prone to infections, I am more prone to developing complications of these infections, and I am at higher risks of developing mental illnesses. Every year comes with a new diagnosis and a number of additional tests I have to go through or treatments I have to take. 

Yet, I have chosen to work in academia – the best environment to combine research and education, which I both love and I am talented for. But a career in academia with a debilitating medical condition? IBS has certainly influenced my academic journey. The treatments I had to take during my PhD that hampered me to function correctly. The stress during my PhD promotion – not because of the promotion itself, but because of the fear of having an IBS attack on this day. The long days in the lab after a sleepless night. The business lunches or conference dinners with collaborators, while being worried about hidden ingredients that would trigger an attack. The lectures I gave with a terrible abdominal pain, having to isolate myself during the break to try to get some energy back.

All of this with barely anyone noticing it.

Similar to many other debilitating conditions, mine is mostly invisible to the outer world. For many years, I have considered this as both a chance and a drawback. A chance, because physical weakness is not something I wanted to brag about on the working floor. A drawback, because no one can see the pain I sometimes feel and the resulting isolation and recovery I need, sometimes for days.

Physical and mental weaknesses are not welcome in academia. Academia is a world where success and overwork are glorified. At least – this is what I have thought for many years. For many years, I have thought that I should be as strong as possible and keep my health struggles within my close circle. Until realizing that many of my colleagues and students must also be suffering from IBS or any other “invisible” but debilitating condition. I always had the chance to be surrounded by caring friends, colleagues, and family, as well as supportive supervisors, but what about others? What about others who do not get this support and feel excluded from this very competitive environment or – even worse – push back their physical and mental boundaries to try to cope with it until breaking off or burning out?

My health has become my priority. I have decided to climb the academic ladder while accepting and embracing both my strengths and weaknesses. Sleep, physical exercise, social connection and stress-lowering activities have become my priority. Continuous overworking is not an option. Despite my condition, I am convinced that I can be as successful as any other researchers. I am convinced that I do not need to work 80 hours per week to be a talented researcher, an inspiring teacher, and a trustworthy colleague.

I wish that these lines inspire other scientists and students who suffer from a chronic medical condition and give them more confidence in being open about their (health) hurdles. I wish that my story raises awareness for a subject that is still too rarely mentioned in the academic world – and beyond.

by Isabelle Kohler

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