My IBD Life - Ode to Despair

I sat down to write this article with the intent of describing some personal experiences with my family and friends during a period of progressing sickness that eventually led to surgery. It’s very hard for me to segregate various aspects of that time. I was struggling on many fronts. Everything seems so intertwined. I probably would have managed better, if the only thing I had to worry about had been my health. Sometimes, I wonder if I could live through that again. The worst parts of that period were the nights. Serially failing medications had brought me to a point where I was living with severe chronic pain and total incontinence. Every night I would go through a sequence of muffled crying, screaming, and dancing, to wither and end up on the floor like a lifeless body. I did that deliberately to tire myself out and fall asleep. Every night it was the same routine. Some nights, the urge to end it all was too strong to resist. I dreaded the nights and took up a night job to cope. I thought if I forced my mind to concentrate on a job, it would help with the pain. I’d suffocate at work, and even had “accidents” at work, despite wearing diapers. Everyone around me in my home or outside was oblivious to what I did to myself in my room in the dark. My coping mechanisms bordered on the psychotic.  I would strangulate my body parts to make them numb. I would try to substitute the pain with another kind of pain by using an excessively hot pad. The pain was too much. The blood was too much. The nights were too long. The thing that hurt more than the pain was that every medication would make a mockery of my attempts to live. Early promising results followed by a rapid decline leading to increased symptoms were a pattern. At my core, I’m not a very hopeful person. My life circumstances have molded me into a deeply introverted and pessimist personality. My mind constantly tries to simulate everything that can go wrong and I try my best to put control measures in place. With this disease though, I was helpless. I read vehemently, but I was not a doctor. I forced myself to cultivate hope with every new medication. However, I always ended up dejected. Sometimes, I felt like a bloody soldier struggling to stand straight, kneeling on the ground against his sword, and waiting for all of it to get over.

As I started reminiscing those nights, my intents changed. I wanted to describe that cycle of hope and consequent despair to someone. It resulted in me writing a poem which I’m sharing here. 

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

They tell me the same things again and again.

And each time they say it, I believe them. 

I hide from my fears, behind a translucent curtain.

Weak ropes of hope bear the weight of my pain.

Soon it all comes crashing down to the ground.

And I see them again. The blood-hungry hounds.

Dread sets into me as they approach and surround.

Every inch of me bleeds. My screams resound.

And when it’s all over, I look down from the edge.

Frail, pale, broken, and defeated, after the rampage.

No antidote to my ailment, my soul feels caged.

Desperate, I am prepared to embrace the only escape.

“Stop! Don’t!” I hear a voice break the silence.

I recognize the voice. It’s them. Once again.

They praise my resilience. Talk about Providence.

Promise me there’s a reason for my existence.

They look to infuse me with hope and faith.

They tell me tales of the fierce and brave.

Why then I don’t believe what they say?

Oh! It’s because, soon after ...

They tell me the war is over and we won.

They tell me that the night is at last, gone.

They tell me the sun’s rising on the horizon.

They tell me, they tell me it’s a new dawn.

There was a time when I tried to capture my pain in words. I was better at writing then. With time, the writing started to feel like a futile exercise. The nights never went away.  Instead, I now try to repress those experiences in some corner of my brain as I have done with other traumatic incidents that I have lived through.

My doctor once told me that there were only 2 patients other than me under his care, with a severity of disease that was similar to mine. I felt sad, but then I realized it’s a good thing that more people do not go through such experiences. However, I’m sure there are enough like me in my country which has a population of 1.3 billion, but I’m not sure if everyone is as lucky as me. The mental health of patients with Inflammatory Bowel Disease has never been a priority in the Indian Healthcare system. It’s time that we begin to provide holistic support to young adults with inflammatory bowel diseases to enable them to manage this disease better and come out of the experience with as little residual trauma as possible. 

Please stay safe and take care. See you next month. :)

Studying with Crohn's

By Simon Stones

I feel as though I’ve been studying for most of my life – well, there is some truth in that! After 22 years in education, it is safe to say that I am well and truly ready for the formality of it all to end… though I know I’ll never stop learning in life!

There’s no right or wrong way to go through education, especially once you reach the end of your compulsory education. Add into the mix one or more chronic conditions like inflammatory bowel disease, and things can feel a little more complicated– especially when deciding on what you want to do, and the way in which you want to do it. Moreover, what works for one person won’t necessarily work for another – which is it’s so important to do what’s right for you. 

I went straight from compulsory education to University, where I completed a four-year Bachelor’s degree in Biomedical Sciences, before going straight to a three-year PhD in healthcare. Some may say it’s sensible to get all of your education done at once. Some may say I was lucky to be able to progress through the ranks one after another. Some may also say I must be slightly bonkers. In all honestly, it’s a good mix of the three, especially the last one!

My thirst for learning really began during childhood, while living with juvenile idiopathic arthritis. As a result of my restricted mobility at the time, I struggled to participate in sport. It is here when I channeled my energy into my academic learning – my body wasn’t much use, but I had a brain and I wanted to use it. Living with a chronic condition throughout my childhood had, in one sense, conditioned me to be inquisitive and desperate to learn. Although I missed quite a lot of time at school through being at the hospital and being unwell, I never gave in. I would always be working – it could be reading, completing workbook exercises, or writing. Every appointment, every infusion, every day sat in bed unable to move. In one sense, it gave me a purpose at a time in life when a lot of things didn’t seem to be going my well.

When I was diagnosed with Crohn’s disease at the age of 14, I was just about to embark on the final two years of secondary school here in the UK, where I would complete my first set of important exams, known as GCSEs. At the time, I wanted to become a science teacher, and so I knew it was essential for me to do well in my exams. Everyone kept telling me that I would pass, but being the perfectionist I am, I didn’t want to just ‘pass’ – I wanted to ‘the best’. Others often assumed that because of my health problems, getting a ‘pass’ would be ‘amazing’. This was often well intended but came across as a little patronising. I asked myself why should I achieve less than what I am capable of, just because of my health? It was this mindset which pushed me through. Don’t get me wrong – the stress of the exams in their own right, plus the stress I placed myself under, wasn’t helpful towards my health, and a regular pattern around exams would be a flare-up of symptoms. The same went for my A-Levels, the qualifications required for most University courses.

Over time, I tried my best to develop strategies to help to me manage my stress, while making sure everything was in place to help me achieve my potential without being at a disadvantage from my health conditions. It is often easier said than done, but planning has been fundamental to me limiting the stress I’ve found myself under while studying. In practice, this meant keeping on top of work, writing up notes as soon as possible, and looking ahead at what needed to be done by when. I also made sure that my school and college were fully aware of my health conditions, and that I had access to all the support I needed. This included extra time and the option of rest breaks in exams if needed, as well as being in a room away from the main exam hall that was near to an accessible toilet. Nowadays, with increasing use of technology, I would hope it is easier for students to keep in closer contact with their teachers/tutors, as well as be able to access different pieces of work electronically. This was starting to happen when I was at college between 2010 and 2012, but a lot has changed since then!

“It always seems impossible until it’s done.”

I started University in September 2012, originally studying Biology with a view to becoming a science teacher. I had toyed with the idea of studying Medicine, but I came to the decision that it wasn’t for me at the time. Sometimes I wish I had pursued the Medicine route, but I’ve certainly no regrets. After one year of Biology, I decided to focus my degree on Biomedical Sciences. It was during this period that I began my patient advocacy journey and found my love for research. Inevitably, the first few years of my degree involved quite a lot of work in the labs, which I thoroughly enjoyed and found fascinating. However, on a number of occasions, I did have some issues. While experiencing flares with both my Crohn’s disease and arthritis, in addition to experiencing quite severe cramps and pain while also in remission, I found it challenging to be on my feet constantly while performing tests in the lab. I always had a lab chair nearby, but it wasn’t always practical to be sat down. There were many times when I would be wishing for time to pass quickly so I could get my work done and sit down to get some relief. These experiences helped me to decide that being in the lab 24/7 in the future wouldn’t be for me, despite my love for science and research. Thankfully during my third year, I spent a year on secondment with a pharmaceutical agency, where I was able to use my knowledge and love of science in a way to inform medical communications and the drug development process. Like most things in life, you learn along the journey… coming across the things you least expected doing that you learn to love the most.

While I loved my time at university, I certainly wouldn’t want to repeat the undergraduate degree process! While it was worthwhile and an incredible experience, it was demanding. Thankfully, I graduated in 2016 with a first-class degree.

I then found myself at another crossroad. Do I take a graduate job and leave studying behind, or do I go on to do a PhD? Most people tend to undertake a Master’s degree before a PhD… but I guess I’m not most people. I came across a three-year funded PhD place in healthcare, focussed on supporting children with long-term conditions. I felt as though it was screaming out to me, ‘please apply!’ I decided that I would only apply for this PhD, and if I didn’t get it, then I’d look for a graduate job. I genuinely didn’t believe I would do, but with some luck, I received that wonderful call on Thursday 9th June 2016 – the afternoon after delivering a talk at the European Rheumatology Congress in London. I couldn’t believe my luck!

Fast forward nearly four years, and I am near the very end of my PhD – writing up my PhD thesis on a topic that is so close to my heart – supporting young people with juvenile idiopathic arthritis and their families to manage their health and wellbeing. It’s like a dream. The PhD study experience has been a very different one to everything before. Unlike school, college and an undergraduate Bachelor’s to a degree, a PhD doesn’t feel like ‘studying’. It certainly feels more like a working job, but one where you’re wandering around in the dark. It’s also quite an isolating and lonely journey, though I have been blessed with wonderful supervisors, supportive colleagues, and great friends and family.

As I’m writing up my 80,000 to 100,000-word PhD thesis (yes, I know, it’s going to be a book!), I’ve been doing an awful lot of reflecting, thinking about what worked well, what didn’t work well, and what I would do differently if I was to repeat the PhD again, or do another PhD… which I can guarantee is not going to happen! During this thought process, I feel blessed to have been given the opportunities that I have received over the years, but I also acknowledge that the majority of those achievements have been down to guts and perseverance – and I should be proud of that. 

Sadly, it has also highlighted many of the cracks where people with chronic conditions fall through along the academic journey – and how attitudes and practices need to change so that others aren’t discriminated against by an ableist culture which doesn’t recognise and support people of all backgrounds to achieve their goals. We can do this by speaking up, highlighting our needs, and making sure others support us in doing what is needed. Never feel as though you are making a nuisance of yourself, or that you are demanding unachievable things – and if you are made to feel like this, don’t give up, seek support, and fight for what you are entitled to.