Scene: My Thursday afternoon, I had the most disgusting coffee I’ve had in years and some biscuits that tasted of heaven after being unexpectedly stranded in a hospital and having just cried in pain at having a camera inserted…somewhere.
Too much? buckle in it’s probably not going to get better…
Scene: the toilets of ‘Temple Studios’ Punchdrunk’s immersive theatre show in Paddington, May 2014. It’s my last chance to see this show I love, but I’m in the toilets crying briefly and scared.
Scene: Earlier that day, I was sobbing outside Paddington station. To the point, a lady walked past, went back into a cafe and got me tissues to hand me. I still think of that woman often.
Scene: I text my mum from the toilets of Chipotle in St Martin’s Lane and debate whether I should leave a weekend away in London because I was so scared of what was happening to me. Seeing blood in the toilet when I went.
Scene: Doubled over in pain, walking to my car, wondering if I’ll survive until I find a toilet. Smiling, making small talk with the friend I’m giving a ride to….before wanting to cry in pain when I finally (just) make it to the toilet.
An array of random scenes from ten years (ish) with Ulcerative Colitis. As much as I talk a lot of shit on the internet (boom boom), I don’t talk about this as much. For a variety of reasons. Firstly the idea that no people don’t want to hear about this poop-related disease (well tough you’re gonna today). Second, the idea that I don’t have a chronic illness ‘badly enough’ to warrant talking about it on the internet. There’s a kind of idea stuck in my mind that until I’m suffering super severe symptoms/impact/whatever, I don’t have the right to because ‘people are more ill than you’. And also because I look ‘fine’, I seem ‘fine’ life is mostly ‘fine’, then I shouldn’t complain…
But this week, two things happened within 24 hours; I saw a TikTok from my dear friend Mads, talking about their Type 1 Diabetes and all the struggles they have that just aren’t talked about, or that when people talk about these things, it’s super sugar-coated or glossy. And I feel the same- I feel like we only talk about ‘overcoming’ things or ‘doing things in spite of’ our illnesses/conditions, and sometimes life just doesn’t happen that way. Sometimes, the biggest achievement is getting to the end of another week/day/hour. And sometimes it’s hard. Mads also talked about not seeing their experience and being the person they need, and I agree. I don’t know how much I’ll talk about this, but in order to be a person I need to see, I’m pledging to step up and talk about it too. And then, oh yeah ended up in hospital, possibly not being allowed home and crying in pain as someone decided to stick a camera somewhere we don’t talk about (buy a girl a drink first at least…or give her more than 2 hours warning).
And so I’m going to try….firstly, it was a ride just getting here. Those first two ‘scenes’ were the tipping point of my initial diagnosis. A horrible experience that led to a doctor's receptionist apologising profusely to me- do you know how hard it is to get a Doctor’s Receptionist to show any kind of compassion?! At this point, I’d gone through about a year of doctor’s visits and waiting lists. It’s a whole saga involving, at one point, having to go through a prescription of peppermint pills (yes, really).
I don’t think I can also do adequate justice here to the trauma of the diagnosis process and ongoing testing. When you aren’t used to it (and in my case have at that time undiagnosed autism, which also accounts for a more acute than usual touch aversion), the way in which many medical professionals will go about very invasive, very intimate examinations….haunts me to this day. No explanations, no real preparation (erm, pardon the expression), no compassion for the pain involved, the vulnerability. That was my experience in the early years, I will say the last two times I’ve had any kind of extensive hospital visit, I’ve found a huge change in the nurses and Doctors. But those early years, still today, account for the fact I burst into tears at the mere thought of a sigmoidoscopy this week. Those early years too, are the reason I still largely fear some appointments. Again that is a bigger conversation, but to say getting a traumatic diagnosis was also incredibly traumatic in the process.
So, what IS Ulcerative Colitis? Well, to quote the above-mentioned Crohn's and Colitis UK website.
Ulcerative colitis is a chronic disease of the large intestine in which the lining of the colon becomes inflamed and develops tiny open sores or ulcers. This condition is the result of your immune system’s overactive response.
Or more specifically
Ulcerative colitis is a chronic inflammatory disease of the large intestine, also called the colon, that affects the lining of the colon and causes small sores, or ulcers, to form.
Those ulcers produce pus and mucous, which cause abdominal pain and the need to frequently empty your colon.
Sounds super fun right? It’s an autoimmune disease, so it’s nothing to do with something I ate, or did. In fact;
A normal immune response would cause temporary inflammation to combat an illness or infection. The inflammation would then go away once you are healthy and free of the illness.
In ulcerative colitis patients, the inflammation persists long after the immune system should have finished its job. The body continues to send white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcers.
(For more you can visit: Overview of Ulcerative Colitis)
Super duper fun, am I right? Ass ulcers? Who DOESN’T want a piece of that? Mucus? Oooh, that’s a word we love to hear in any context. Bleeding from places that probably really shouldn’t bleed? Extra extra fun. General poop-related chaos? (too much, too little, magically both at the same time….yup that’s happened). Add into the mix too a variety of fun symptoms that include but are not limited to; Nausea, vomiting, cramps and pain, joint pain, muscle fatigue, anaemia, fever and night sweats (yes your girl thought she was going through early menopause). As well as a whole host of unproven but equally weird stuff.
And look, it’s not like I want to go around shouting all the weird shit my body is doing to everyone, but actually, much like the (much needed) conversation around menopause that’s happening, if we talk about it, people feel less alone. Whether that’s people who share the symptoms or just for friends to empathise, like my friend Mads above, we might not share the same symptoms, but we can each empathise with the other about what it’s like to have a chronic illness. And if we normalise talking about these things, maybe folks like us can feel less alone in the world because it is incredibly lonely. When it’s just you and, well, in my case the toilet or your bed feeling in pain, and alone and like you can’t reach out to friends and say ‘Hey, I feel like my stomach is trying to do what that thing did in Aliens today’ then it makes an already miserable experience even more so. I’ve felt isolated and alone this past week when things have been really bad. Ironically when I was feeling at my worst didn’t feel like there was anyone I could reach out to and say. It’s not like saying ‘oh I have a migraine’ or ‘Oh, I’ve got covid’ even. It’s both the ‘ick’ factor of icky symptoms but also the…it won’t be cured, but it might get less severe…or it might get worse. That feels a lonely place with nobody to talk to sometimes.
To describe a flare-up then…it can start really small, slight changes…then escalates to a selection of blood and mucus situation. The thing is, too, you never know when it’s going to be a ‘just a few days possibly a reaction to something’ or ‘oh shit, I forgot my medication, but it’ll settle down’ flare or an ‘all guns blazing, heading towards total chaos’ kind of flare. And given the amount of medical gaslighting we often see, given the utter state of the NHS too, we don’t tend to advocate for ourselves early enough given too we’re all used to operating at a level of ‘Ok (but not really)’ and while in this instance-for super graphic context- I was passing blood in large quantities, in a lot of pain not really able to function, nearly passed out several times I just…carried on. Why do all this? Partly from a mentality of ‘well it’s not going to stop me’ and partly from a mentality of ‘it’s not supposed to stop you’ and ‘you don’t seem ill’. The latter haunts me because I’m aware I’ve never looked particularly ‘ill’ with it. I’ve never lost noticeable amounts of weight quickly because of it. This is obviously a good thing, but that doesn’t mean I’m not struggling with it.
And speaking of struggling, there’s the anxiety. Every time it flares up badly, there’s a whole host of mental health elements that go with it. I spent Monday night in a hotel in London, very much awake all night, not only because of pain and getting up to use the toilet but because I had by about 3 am convinced myself that I was, in fact, dying this time. While this is a broader symptom of an anxious mind, it’s also where we often end up with chronic and long-term health conditions: chronic low-level worry, however ‘good’ things are going. I’ve lost many a theatre trip to worry about it- like Punchdrunk above, forever cemented with that moment in my mind, or Alan Cumming this week (he’d appreciate the bum-related humour at least).
These vary massively but generally run the gamut of the following; Firstly, the very simple equation of ‘Am I going to shit my pants if I move from here’, which, let’s face it, is bad enough on its own. But beyond that, when it gets worse, there’s a variety of ‘what iffery’ that comes with it. What if this is the time treatments stop working? What if this is the time I need surgery? What if this time it’s cancer?
Because all of these are realities, I live with. The escalation of treatment and what that means for side effects, lifestyle, anything. The possibility (probability) of surgery at some point in my future. I’m prepared for all these; I’ve made peace with the possibility, and honestly happy to live with higher-level treatments, to live with a stoma bag rather than the alternatives. But it’s still a lot to live with as a possibility, just lurking out of sight. And while some people might say ‘Oh don’t worry until it happens,’ personally, for me, making peace with that is the better way to approach it. But I can’t lie that it sometimes gets to me.
Then there’s the cancer question. Put simply, people with UC are much more likely to develop Bowel Cancer (pretty logical). The longer you have it, the greater the odds. When Chadwick Boseman died of colon cancer, it sent me spiralling, someone not far off my own age dying of cancer I’m statistically more likely to get…as much as you can push it away, make peace with it sometimes it hits you ‘oh yeah this could very quickly become my reality’. The mental health toll of that is very real. Once you hit the ten-year mark, too, those odds skyrocket and guess which lucky number I’m on now…. it’s a weird double-edged sword, too, because while we’re monitored more closely with more colonoscopies and sigmoidoscopies than other people (such fun, more on that), our day-to-day symptoms already mimic bowel cancer. I mean, god-bless Deborah James and her campaign to raise awareness on toilet roll packets, but when the list of symptoms is your baseline, it’s both a scary reality and one where any time the symptoms increase, it’s an ‘Oh fuck is it my time now, then.’ moment. And that’s not morbid or pessimistic; it’s pragmatic. In practice, there’s nothing I can do to prevent it from happening other than manage my condition and monitor it. And accept that, too, like a stoma bag, it’s quite possibly part of my future.
And I just don’t think it’s something people think about people living with. Which is fair enough if it’s not something you’ve encountered. But there’s the frustration at having a thing that is debilitating without being obviously so. That gets confused with other things (and while IBS and food intolerances are serious in their own right/way they aren’t the same as a chronic autoimmune disease, and no a green juice won’t help). It’s the feeling people don’t think it’s that serious; it’s currently taking 18 tablets a day serious, much of them being some hefty steroids, and narrowly escaped a hospital stay serious and on the spectrum of my disease I’m not fact considered ‘seriously’ ill…so it’s quite well serious and not alas something a green juice can fix.
It’s now been a decade nearly, and I wonder how many of my friends, colleagues, and internet strangers know I have this illness. An illness that I’ll have forever, that will probably get progressively worse and might lead to more complications; other illnesses may even contribute to how I die. I’m not being morbid, just realistic. And while most of the time, day to day, I don’t have to think too much about it, there are times like this week when it consumes my life. And it’s hard too, as a grown-up but single person; I feel like sometimes this is one of the few times I do wish I had a partner, an in built person to talk about the worst of it with. Someone to give me a hug after I’ve had a day at the hospital. Someone to come with me to the hospital. There are very few times I will lament the feeling of being alone, but dealing with a serious illness is one of them. Like that day sobbing in Paddington because an unthinking doctor left a scary message on my answer machine, putting the fear of god into an already anxious person going through a weird hell that you can’t really talk to anyone about. But also you have to ask too: who would sign up for that as well?
It’s also not a very socially polite disease to have. It involves talking about poo and bottoms and all manner of impolite things that we’re supposed to gloss over. And I get that not everyone is quite as ready as I am to talk about bums and poo, but also the glossing over the not talking about it feels very much like glossing over the illness I have. And that conversation with my dear friend who might not share my same illness but
knows what it’s like to walk in similar shoes helped. As has, as ever with me, writing creatively. In the series of stories I’ve worked on for a few years now, there’s a strand of talking about illness honestly, and the struggles with it through my characters, something I feel passionate about doing (future publishers/producers hit me up etc). On a related note, I read a book with a character who has Ulcerative Colitis for the first time last year- and I cried (in the book With You Forever by Chloe Liese). And perhaps that too is the motivation here- I want to be the change in representation in fiction when I get to write it for page or stage. But also maybe I have to start with the change in talking about it myself.
Also lets face it this was a shit week (final shit pun promise) and I really wanted to complain into the void. Or maybe one or two compassionate ears.
So what do we think, can I take my shit-talk a little more literally around here now and then?
I'll say it as much as is needed. Chronic health issues and disabilities are not a competitive sport. Your reactions and struggles are real, reasonable and as disruptive as you find them. Whether in our heads or conveyed by others, dealing with these issues is hard. Big hugs lovely x