I’m not really sure how to start this intro, in the same way that I didn’t really know how to react when one of my best friends found out that she had developed a chronic illness.
You say you’re sorry and that it really sucks.
Nikki is the friend that I speak to the most on a daily basis, listens to my rants and answers every strange question I ask without enquiring why. She asks as many questions as I do (we love a Q&A) and is brilliant at chatting in depth on a myriad of topics, from Judaism (She knows a lot. No, she’s not Jewish – she just likes a lot of famous Jewish people, OK?!) and the Chinese zodiac to the current Slumflower/Florence Given fiasco. She is incredibly smart, curious, kind and funny. These are the qualities that define her, not her chronic illness.
As the kind of person that likes to solve problems and remain positive, I discovered that those personality traits don’t bode well in situations where the problems can’t be solved, and that your positivity can become toxic. It becomes hard to gage when your friend needs a laugh/light relief to take their mind off the pain or whether they’d like to talk about how they’re doing or whether you should just let them know that you’re simply there if they need to talk.
While it’s difficult to hear that your friend has Crohn’s disease, it’s nothing compared to actually living with it. So, I’ll hand over to Nikki to tell you all about her experience from the diagnosis to the challenges and the silver linings.
Hi, I’m Nikki. Just over a year ago, I was diagnosed with Crohn’s disease.
I’m infuriated, frankly. If I must have a disease, I would like something a little more feminine or alluring. We, as a society, can accept Nicole Kidman daintily coughing blood into a hanky in Moulin Rouge, but when was the last time you saw anyone with bowel problems on TV who wasn’t a ‘gross’ middle-aged man? No sickly ingenue, no bold fighter – I’m in the same category as Kevin Malone from The Office and his anal fissures. How vexing.
That’s my petty rant out of the way. Now I’ll be serious.
Getting a diagnosis
For years, I silently tackled a very annoying feeling. It was like my guts had been replaced with a cement mixer, churning around at full power. It felt like severe nerves mixed with the moment you suspect you might have food poisoning. In short, I felt well dodgy.
I suspected it might be anxiety – tummy troubles are a super common side effect, after all. I tried mindfulness. I tried distraction. I tried pilates. I tried to eat more fruit and veg. I tried exclusion diets. Nothing helped.
Between 2015 and 2019, the stomach-churning feeling became more frequent and more intense. I slowly became more isolated, afraid to leave the house for long. This didn’t make me an ideal friend, because hanging out was tricky! I couldn’t properly enjoy holidays, and I felt stressed out by day trips. Even going to the cinema made me feel sweaty-palmed! When I started getting some slightly worrying physical symptoms (dodgy stomachs and bleeding), I realised it might not be in my head. I needed to see a doctor.
I’d put off seeking help for ages because I was terrified of all things medical: injections, blood, pain, hospitals. I was sure that I’d spontaneously combust with fear if I had to face any of them.
Luckily, I didn’t combust. Unluckily, I was diagnosed with Crohn’s disease on 29th November 2019. Crohn’s disease is an autoimmune disorder where parts of your digestive system become inflamed. One of my parents has it, but because my symptoms were so different to theirs, they were confident I hadn’t inherited it and often reassured me it was probably just an anxiety problem.
When I was diagnosed, I felt so many emotions. Gutted is an obvious one. Worried – I didn’t want to have a lifelong condition and I had first-hand experience of the effects. Yet I felt a little relieved because at least there was a name for what I had. There was treatment to help. And, if I’m honest, a petty part of me felt vindicated: ’See, I am ill. Stop telling me it’s all in my head.’
When things don’t go swimmingly
I got very ill, right after my diagnosis. Possibly because I’d gone so long without treatment, I got an abscess and a fistula (I’ll spare you by not explaining them, but they’re not very nice). I had three MRI scans, three operations and countless blood tests. For months, I couldn’t move much and needed 6 weeks of painful daily dressings. That was a right bummer. Lol, bummer.
Today? I take two kinds of medication, and I have a plastic band called a seton suture in my arse cheek. It’s temporary but not ideal! I feel much better but, if I’m honest, I’m in some level of pain every day. Sometimes it’s a mild irritation, occasionally it feels like I’ve got a barbed wire wedgie.
My broken arse aside, Crohn’s disease has had a few other side effects for me. Bloating. Soreness. Fatigue/low energy is a big one. This is common for people with chronic illness but can be difficult to explain. One woman created something called Spoon Theory, which uses spoons as units of energy to illustrate fatigue – take a look if you’re curious! I can also be a bit irritable and bad-tempered too, which is mostly understandable.
There’s a bright side
In a strange way, I have gratitude for everything I’ve suffered. It might be some self-flagellating Catholic DNA floating around in my bloodstream, but I hope it’s actually pride from overcoming my fears. I spent years being terrified of this. And I survived.
Another rainbow in my thunderstorm are the new friends I made – there’s a pretty active chronically ill community on Instagram. I didn’t seek anyone out, but when I got ill, people I’d never spoken to would get in touch. After I’d post about a scary hospital visit, a new friendly face would pop up: ‘Mate, I’ve been there. Do you want to talk about it?’
Jaye, Soph, Liv, Kate, Hafsah and Grace (among others) were all absolute superstars by offering support, advice and words of comfort. I really appreciated people checking in on me and understanding my low energy and mood.
Being ill gave me a whole new perspective on body image too. When I was at my worst, I lost a lot of weight. By Instagram’s standards, I’d never looked better! But in reality, I was sad, super sick, and in pain – and I was stuck in bed all day. It didn’t matter that clothes hung on me differently, there was no one to see me. I didn’t have the energy to go outside. All I wanted in that moment was to move through life easily and comfortably, and it didn’t really matter what size I was. It was a harsh way to learn this lesson, but I realised that the joy in life is about doing things – and how you look while you’re doing them is largely irrelevant.
The thing is, Crohn’s disease is increasingly common. Right now, Inflammatory Bowel Disease (like Crohn’s) affects 0.5-1% of people in the UK. It feels like there’s never been a better, more urgent, time to talk about it, raise awareness, and make life more comfortable and accessible for those affected.
For anyone newly diagnosed, I’d recommend staying off the Google for a bit. It can be easy to scare and intimidate yourself early on. Actually process your diagnosis first. If you feel sad, be sad. If you’re angry, that’s OK too. Keep talking to people about how you feel, cry on their shoulders. It’s so much healthier than bottling it up or putting on a brave face. We love the phrase: ‘It’s OK not to be OK’. And you don’t need to pretend to be OK here. Not at all. The sooner you deal with your emotions and process your thoughts and feelings, the sooner you can start to heal. Chronic illness is one of those things where you can’t say: ‘things will get better’. I can’t promise that. But I can promise you will be stronger and braver than you’d ever believe you could be. You have everything you need to cope with what’s about to happen – you just don’t know it yet. I hope you have good people around you to help. But if you don’t, you’ll find such a kind, inspiring community on Instagram.
Fun fact, researchers think Charles Darwin had Crohn’s disease. And he still did pretty well for himself. Things aren’t over for you. Far from it.
Over on Instagram…
If you want to see pretty infographics that sum up chronic illness life, I’d recommend checking out @colourblind_zebra. It makes me feel very seen. I also love @jayerockett’s account, as she reminds me finds the magic and beauty in every day.
And you’re welcome to follow me, @nikkimcmullen 😉
A big thank you to Nikki for sharing her personal experiences and giving me one (or a couple) of her spoons! I hope that it’s helped you or someone that you know in some way if you/they’re going through something similar.
Also, go and check out Nikki’s blog for more of her brilliant insights. She recently, very kindly, interviewed me about being British-born Chinese on there too so go and check it out if you’re feeling nosy 😉