Chronic conditions can be isolating and make you feel invisibleMitya Ku

I’m writing this article at midday, lying in bed, having just thrown up. But, unlike most other students, the reason isn’t a bad hangover from a night out, it’s because I have a rare illness called Sphincter of Oddi Dysfunction (SOD).

If you’ve heard of SOD then you’re probably either one of my friends or a very precocious medical student, because it’s something most people (including many doctors) don’t know about. There are no articles about it, nobody else I’ve ever met has it, and it can be a struggle even to find decent medical information or a doctor who can help.

The Sphincter of Oddi is a band of muscle at the bottom of the biliary tree which controls the flow of pancreatic juices and bile into the duodenum, and is a necessary part of the digestive process. In someone with SOD, the sphincter muscle does not open when it should and can unpredictably go into spasm. This prevents the bile and pancreatic juice from flowing through normally and causes a backup, which can then cause problems with the liver and pancreas (and is very, very painful!). It usually occurs in people who no longer have gallbladders. The main symptoms of SOD are chronic abdominal pain, sickness, diarrhoea, fatigue and episodic flare-ups which cause severe pain. These flare ups are unpredictable, can cause pancreatitis or liver problems and often lead to hospitalisation.

While having Sphincter of Oddi Dysfunction is unusual, having some form of rare illness actually isn’t, as nearly seven per cent of people in the UK will be affected by one at some point in their lives. Having a rare condition can be difficult, lonely and limiting, and can be particularly hard in an environment like Cambridge – one with an overriding focus on success, high work load and pressurised terms. In an environment built for able-bodied students, support and understanding make a huge difference, so here are a few things you need to know about having a rare illness.

It can be limiting

Meeting the constant work deadlines of intense eight-week terms was just not possible for me, as I spend much of my day too ill to work properly, and then miss weeks at a time recovering from a bad flare up that has put me in hospital. After pushing my body to its breaking point at the beginning of second year, I had to admit that the system and my health were not going to cooperate. Accepting the limits, both of an institution that is so prestigious, and of my own body, was really hard. Thankfully I was able to push for studying adjustments that put me on an equal footing to my healthy peers and has made staying at Cambridge possible, but this was hard-fought and also hard to admit I needed.

It can be isolating

Having any medical condition can be isolating. Fatigue, pain and sickness mean I have to spend a lot of time in bed resting and sleeping. I also have to be careful about doing too much and setting off a bad attack, so it’s very rare that I can participate in the kinds of tiring social activities most people do without thinking, like clubbing. I tried having a proper night out the night before my 21st and spent my entire birthday in hospital. Would not recommend.

Because flare-ups are unpredictable, I can be unreliable. I often really want to go to events, from committees to dates to birthdays, and try to plan for them, only to end up in too much pain to leave my room. Some people understand but lots do not and, as happens to many chronically ill people, I lost quite a few friends when I first became sick.

I have other health conditions that isolate me in the above ways, but a rare illness is even lonelier because you don’t have the same community of fellow sufferers you can lean on for support. Thankfully, the internet has allowed me to connect with others who do have SOD, and the Disabled Students’ Campaign in Cambridge is a great source of solidarity.

It can be invisible

Not only is it an invisible illness in that I look physically the same as I did before, I too am invisible when I am struggling. When things are rough, I am in my room, or I’m in hospital. Either way, I am hidden from most people. They see me when things are relatively good, when I’m not throwing up, when I have energy, when I seem ‘normal’.

Doctors might not have heard of it

Most nurses and doctors haven’t heard of SOD. This is understandable: there are thousands of different conditions and they can’t possibly know them all. But having paramedics, nurses and doctors all Google your condition on the way into hospital isn’t particularly reassuring!

With a rare illness, you’re often in the unusual position of knowing a lot more about your condition than the medical professionals you first encounter. I go into hospital with a printed care plan from my specialist with what needs to be done in an emergency, but even so...

You might not be believed

When your condition is invisible and rare, sometimes people just don’t believe you. This is difficult when academics, distant family members or peers think you’re being lazy, or suggest you just need to ‘think of yourself as well’ (unfortunately, positivity, fresh air and kale do not stop your bile ducts from being shit).

It’s even harder when it’s doctors who don’t believe you. This happens all too frequently prior to a diagnosis, when certain medical professionals will dismiss any symptoms as being caused by ‘normal teenage anxiety’.

Even when endless tests and specialists have finally diagnosed your condition, there are still some medical professionals who won’t believe you, and I can’t begin to explain how painful that is. Going to a GP to ask for better anti-sickness tablets and being sent away with the name of a book on “psychosomatic illnesses” is painful. So is being stuck in agony for six hours in A&E without the treatment you desperately need because the senior nurse has decided you are a drug seeker. It didn’t matter I had a folder full of my medical evidence; it didn’t matter that I asked them to contact my consultants, and it didn’t matter I was in and out of consciousness from the pain. They saw a young person come in with an illness they had never heard of, asking for specific medications and the immediate assumption was that I was a liar.

Whether it comes from doctors, friends, or strangers, questioning and disbelieving disabled people is invalidating. 

Treatment can be limited

Because research into rare conditions is usually not very lucrative, there are often limited procedures and a lack of proper medications. Thanks to a few doctors willing to try different things, I take a mixture of  medications licensed for different conditions: a cholesterol-lowering medicine that has the side-effect of treating bile-acid malabsorption; a nitrate spray usually used for angina that relaxes the bile ducts; post-chemotherapy medicines that reduce sickness; and a calcium channel blocker also to relax the ducts.

While these things help me, there isn’t (yet) a cure. 

It can be scary

While I try not to dwell on it, having a rare illness is scary. I wake up every day not knowing if it will be a good one, and every time the pain gets worse I fear I will end up in hospital.

The future can be scary too. In an environment where so many people are focused on ‘the next step’ of securing internships, getting jobs etc, I worry there might never be a cure, that my life may not look how I thought it would.  Planning for the future isn’t just exciting, discussing the privatisation of the NHS isn’t just political: these things are full of fear for me.

It changes you

As someone who had always been fiercely independent, I could never have imagined asking my boyfriend to pick up my prescription, or allowing friends to do my supermarket shop. But I have learnt that relying on people isn’t weak. Also, having a chronic illness means your friendships are tested pretty early on! It’s hard to be surface-level friends with someone who has held your hand in an ambulance and who has seen you at your lowest and most vulnerable. As a result, my relationships are generally deeper and more real. I trust people more, I am more open, and any self-protective barrier I once put up was broken down when I projectile vomited in public and my friends fell about laughing with how truly impressive the trajectory was!

As someone who slept my way through science classes, I never thought I would regularly use words like duodenum or know the difference between raised ALT and AST enzymes. I never thought I would understand the world of disability politics, or know more about the law.

It has introduced me to all kinds of amazing people who are changing the system for the better, and has given me a greater passion for social justice too. Although having a rare illness is hard, I am also a better, more driven, more empathetic person because of my experiences.

I wanted to write this article for two reasons. First, so non-disabled students would have more of an insight into the life of someone with a rare illness and make fewer assumptions about what disability looks like. And secondly, because I want other students with a rare illness to know they are not alone. If you’re able, please push for the things you need. We shouldn’t have to push so hard for diagnosis, for treatment and for adjustments, but we deserve to be here and to be unapologetic in asking for what we need to make that possible