Image: Unsplash
Image: Unsplash

Invisible illness: What it’s like studying with Crohn’s, Part 2

Over a year ago, in my first year at Warwick, I wrote honestly on my experience of living with an invisible illness at university; passionately and positively, I outlined my reality of Crohn’s Disease with an unmistakeable thread of optimism permeating my piece. Yet, while it captured how I felt then, I have recently come to realise the constantly evolving, unstable, volatility of chronic illness. The original article was written during a glorious and energy-filled remission, this is written during the tail-end of an exhausting moderate flare-up, one that I was fundamentally unprepared for.

In times of hardship, my Dad repeatedly turns to one advisory tale, it goes a little like this: there was once an individual tormented by mental anguish, their life was falling apart, they were unemployed, their partner left them, and their world was a shadowy, miserable place to live, so, they visited a wise doctor, explaining their bad luck. “It will pass,” said the doctor, and the patient was dismissed, content in the knowledge that soon their turmoil would end. Indeed, it did, months passed, and the patient was back on their feet: they had fallen in love, received a promotion, and the sun seemed to shine on their life once more. Amidst this flurry of optimism and great health, they returned to the doctor to express gratitude and explain the joy their advice had yielded. “It will pass,” said the Doctor once more.

I am faced with the realisation that I am battling Crohn’s Disease, and will be for the rest of my life

In other words, to use the cliché, my Dad is telling me that life is a rollercoaster; where there is an up, there will inevitably be a down, perhaps then it will comfortably plateau, or suddenly loop-the-loop in an episode of chaos or catastrophe, but ultimately it’s going to keep going. I return to this story each time I am faced with the realisation that I am battling Crohn’s Disease, and will be for the rest of my life. I do not wish to counter my previous article, I am not now devoid of my optimistic outlook on living with an invisible illness, however, I would like to try and explain the side of the story that is often difficult to express.

Inflammatory Bowel Disease (IBD) describes Crohn’s Disease and Ulcerative Colitis, it affects over 300,000 people in the UK alone, and whilst it has recently received more traction with celebrity stories such as Dynamo the Magician bringing Crohn’s to the media, it remains a misunderstood and largely hidden ailment. Treatments and outcomes range from diet control to medication to – in the most severe cases – invasive surgery, often removing areas of the digestive tract. That being said, some of the most debilitating symptoms are those that pervade the everyday life of sufferers: joint pain, mouth ulcers and skin issues, indigestion, anaemia, and – most significantly in my case – fatigue.

Fatigue made me so exhausted my boyfriend had to wash my hair as I sat in the bath because I was too tired to stand up

Fatigue, it appears, is a symptom of IBD that is particularly difficult to explain to non-sufferers. The immediate response is often well-meaning advice to ‘take it easy’ or ‘go to bed earlier’ which undoubtedly comes from the heart, but a better understanding of fatigue is necessary for individuals with IBD to feel properly understood. Fatigue kept me away from university for the majority of third-term of my second-year at university, fatigue made me so exhausted my boyfriend had to wash my hair as I sat in the bath because I was too tired to stand up, fatigue is not cured by a good night’s sleep nor a whole day’s sleep at that, fatigue is a war between mind and body, and needs to be considered as such.

‘Spoon theory’ is a metaphor that endeavours to describe the reduced energy levels of individuals that suffer from a disability or chronic illness (such as IBD). Each ‘spoon’ represents a unit of energy that individuals can expend, the number of spoons they have each day is finite, and the only way to replenish the spoon stock-pile is to rest and recover. While it may appear simplistic, it is an incredibly useful visualisation in how it highlights how mindful somebody with IBD must be about their energy expenditure. Using myself and university as an example, one night out takes away all my spoons, perhaps even leaving me in a spoon-deficit considering the energy expended prior to that evening, hence on waking up after limited sleep I will likely only have one spoon to last me that whole day, it could take a week before I am up to full-spoon-count once more. Nonetheless, I can hardly imagine turning down a friend’s birthday party because I have ‘run out of spoons’, usually resulting in the excuse of feeling under-the-weather or attending anyway in a blurry haze of exhaustion fuelled by a fear of missing out and/or letting people down.

It is not until our friends, family, colleagues, and peers understand the weight behind our statement ‘I don’t feel well today’, that the stigmas will dissipate and IBD will feel less isolating and invisible

As I grow older, and encounter new Crohn’s-related challenges, I can retrospectively track the rollercoaster track of my illness. The unexpected, dramatic drop from a height that came this past Easter, has been followed by a current period of relative stability, but I am reminded of my dad’s tale each day making me content in the awareness that this comfortability is likely to pass once again. That is what it is to have IBD, it can feel like a losing battle, but rest assured sometimes you can win (that is before being battered down again, of course). Being a part of various forums and groups has made me aware that many people with IBD struggle to explain elements of their illness. While the sufferers themselves become self-educated experts on their illness, it is not until our friends, family, colleagues, and peers understand the weight behind our statement ‘I don’t feel well today’, that the stigmas will dissipate and IBD will feel less isolating and invisible.

 

 

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Comments (3)

  • Very thoughtful post, and spot on – I completely agree and can relate fully. Thank-you Lucy. Wishing you wellness 🙂

  • Bianca Lisowski

    Thanks for this very thoughtful, useful and honest blog, Lucy. My son, Leonardo, was diagnosed in 2011 aged 16, and I know that he will totally relate to your writing. In September he will be in his third year at Derby University, having gone through a very similar experience, especially regarding the invisibility of Crohn’s, and the lack of understanding of what fatigue actually is and how it affects your life. Keep up your positive attitude, I wish you all the best! ?

  • Good luck with it, Lucy. I was diagnosed at 14 and have been living with Crohn’s for more than 30 years now.

    Times have changed a lot – and probably for the better. There is greater understanding – thanks in part to articles like your own.

    I’ll also add that it seems to get easier as you figure out how to manage it better through experimentation – while recognising what worked a few years ago may no longer work now.

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