Living with an illness which is essentially ‘invisible’ has its advantages and disadvantages.
For me, one of the main advantages has swiftly become one of the major disadvantages – when placed in a work setting, no-one can see what I go through on a daily basis.
Having a hidden illness can be very lonely. Until my diagnosis, I’d never heard of Crohn’s disease, and had no idea how much impact it would have on my life.
But because no two ‘Crohnies’ have the same experience, this article is about my own personal relationship with Crohn’s.
Fun Fact – The infamous ‘chestbuster’ scene in the film ‘Alien’ was inspired by the screenwriters’ struggle with Crohn’s disease, which made him feel like something was trying to punch its way out of his chest.
What Is Crohn’s?
Crohn’s disease is a chronic inflammatory disease of the bowels, mainly involving the small and large intestine – although it can occur anywhere along the digestive tract. It is a lifelong condition, which has remissions and sporadic flare-ups throughout. The main symptoms are diarrhoea, stomach cramps, and blood in your poo – lovely!
Besides the direct effects of this disease, symptoms such as fatigue, pain, anxiety, depression, and difficulty sleeping are all too common.
The exact cause of Crohn’s is unknown; it has been linked to genes and problems with the immune system, while it is also possible that a virus or strain of bacteria could be the cause.
Personally, I put my Crohn’s down to the Guillain-Barre virus I contracted when I was 15. As my immune system tried to fight off the virus, it got carried away – even today working to fight off an invader which isn’t there anymore.
Unfortunately, it now attacks my digestive system instead.
Crohn’s disease is also notoriously difficult to diagnose. It took almost 6 years from when I first started displaying symptoms, to when I received a diagnosis.
During that time, it was misdiagnosed or investigated as everything from an ovarian cyst, to kidney failure, appendicitis, and an ectopic pregnancy, while one doctor thought the pain might be caused by my pelvis not resetting after I had my daughter.
Getting Back To Work - And Other Embarrassing Stories
Having a disease like Crohn’s really forces you to surround yourself with support. Having people who can help you laugh at yourself and find humour in the more embarrassing moments, makes all the difference.
But having to manage this disease whilst negotiating everyday necessities such as the school run, or work, can be a frightening and uncomfortable experience.
Apologising to a teacher for your child being late because you had trouble functioning that morning, or not wanting to tell your boss the truth about why you can’t come in to work today (i.e. because you can’t get off the toilet), are just part and parcel of living with Crohn’s.
I have always refused to let my disease define me, so in general try to ignore any pain or discomfort it causes. The phrase ‘smile and wave’ has fast become my motto, and this has always been the ethos I live by.
Because of the sporadic nature of Crohn’s, I can be fine one day, then struggling the next. This makes working in specific shift patterns complicated; telling your boss that you ‘just don’t feel like it today’ isn’t an option, and bills need to be paid.
By not disclosing my every discomfort or embarrassing symptom, I leave myself open to people doubting the severity of my daily life. When I am in ‘flare-up’ mode, sometimes just rolling out of bed is the mountain I’ve already climbed that day before I’ve even got to work.
When I’ve had to explain myself to my colleagues and my superiors after taking unplanned absences from work, I have had to navigate the minefield of what I consider to be my personal business, and what they need to know for paperwork reasons.
Understanding that they have no idea of the physical and mental implications of Crohn’s, whilst attempting to communicate the difficulties and challenges that I face every day, often makes for awkward conversation.
Too much detail, and it sounds like I am exaggerating; too little and it sounds like I’m complaining for no valid reason. Additionally, feeling the need to justify my illness can have a detrimental effect on other aspects of my health, while also causing a knock to my pride.
Here We Go Again!
In late 2019, the pain in my stomach got so severe that the only option was surgery. So in January 2020 I had 25cm removed between my colon and small intestine. I wanted to keep hold of the part they took out, but apparently that was ‘weird’.
With a new battle scar across my stomach, I went back to work in March thinking that my troubles with Crohn’s would be gone – but that wasn’t to be the case.
The main symptom of Crohn’s which I have always experienced is fatigue, and since my operation this has become debilitating. I can rarely get through a whole day without a nap, and have had moments when I feel completely out of control of my own body. This, along with other contributing factors in my personal life, has led to bouts of anxiety.
‘If You’re Tired, Why Don’t You Just Sleep More?’
Saying this is as helpful as telling a dead person to wake up.
Explaining fatigue is difficult – I tell people that I’m tired, but it is so much more than that. My entire body gets heavy and lethargic, and my eyes sting and close.
I am now having checks for Crohn’s again, and despite Crohn’s being a lifelong illness, any trace of it will be considered a ‘new condition’ since the original disease has been removed.
Plus, after an operation like mine it is common to develop a deficiency in Vitamin B12, which can be a cause of the fatigue. I am currently being treated with B12 injections every other day, in the hope that this helps.
Experiencing the fatigue makes work a daunting notion, and creates an uncertainty which is difficult to cope with. There is the inner conflict between knowing that feeling ‘tired’ will not be seen as a valid reason for phoning in sick, and knowing that sometimes you need to listen to your body.
Staying Positive, Being Creative
I am learning to manage my own capabilities, and have come to the realisation that sometimes, it’s not about what you can’t do, but about what you can.
I can write, and am doing so, which gives me an outlet for my creativity. I am learning game design with my partner, and work on this during the times I feel more alert.
I have no idea what Crohn’s means for my future, but finally understanding that I need to work around my disease, rather than forcing it to work around me, has given me a long overdue feeling of self-acceptance and confidence in who I am.