Embarrassing bodies – Living life with long-term illness.

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This is going to be a hard blog to write. That’s because this is a hard topic to discuss. Even more difficult than my mental health. There’s only one thing more difficult to talk about than my mental health, and that’s my physical health. Increasingly, however, I live in a reality where one has a huge impact on the other. Because I have (take a deep breath) …. I have irritable bowel syndrome.

Ugh, it just sounds gross, doesn’t it? I don’t know if it’s just being British, but the idea of having a condition that has the word “bowel” in it is just beyond offensive. It’s not just icky sounding, it’s icky in reality – people with IBS have the joy of a thoroughly unpredictable stomach. My partner and I often use trains as a helpful euphemism, (because we’re too British to say poop), and IBS can either mean that the trains hardly ever show up, or that your small intestine is the equivalent of Euston station on a Saturday, fully equipped with high-speed rail. With either version, one can expect cramps for days, back pain, gas, and all those other delightful symptoms one might associate with an aggressive bout of food poisoning. Full disclosure, I have the second type. With all of that, you have to thank God for abbreviations. I stick with “IBS” usually, and thankfully, most people know what I mean. Not surprising really, considering it is the reason most people go to the doctors every year. I find though, that when I reluctantly admit it in public, whilst everyone has the knowledge of it, like a dirty, horrible secret, nobody really wants to talk about it. I don’t blame them! I don’t want to talk about it!

So why am I talking about it? I blame my therapist. My therapist has been challenging me to “out” myself in situations as part of my therapy, making me understand that the pressure to keep my obsessive-compulsive disorder a secret from the outside world is only giving it more power. As a blogger, outing myself is sort of my gig. However, today I challenged myself to talk about my IBS. The one thing I dread to talk about, the ugly secret of my life that I am constantly quietly managing, desperately hoping no one notices how long I spend in the bathroom, how my face muscles contract in conversation as my stomach is full of cramps. The last thing I need is to give my IBS more power, and if hiding from it is doing that, then consider me out of the closet.

You might be thinking “Hang on! your IBS is a physical condition; how can you give it more power or less power?” Well, that’s the extra fun thing about IBS – it’s one of those hard to diagnose, sneaky illnesses that often come part and parcel with mental health problems. Along with M.E, chronic fatigue, and fibromyalgia, IBS patients often have pre-existing mental health problems, and thus, the diagnosis of these issues becomes more complicated. Because if you are an anxious person, how can a doctor work out what percentage of your symptoms are from your anxious brain constantly telling your body you are under threat and to respond in kind? Well, I wish I could say there was a test. Like all of those other illnesses I mentioned before, there is no positive test for IBS. There is just a serious of negative tests. Do you have bowel cancer? Do you have endometriosis? Do you have leaky gut syndrome? Do you have Crohn’s disease? No? Well then, you’ve probably got IBS. The spectre of mental health carries over into the treatment too. At every turn, there is a question about the validity of your experience. Not because doctors are evil and don’t understand, but because they are trying to be accurate about an incredibly inaccurate area of diagnosis. Even today, speaking with a doctor who is incredibly understanding and helpful, I was reminded that people with mental health problems tend to experience exacerbated pain and symptoms. In the cruellest terms possible, the question a doctor will need to find an answer to when they are presented with a mental health patient with abdominal pain is: “How much of this is all in their head?”

It is very much not all in my head. It’s in my stomach, my abdomen, the back of my legs, my lower back …. but it is also in my head too.  How irritating! But there’s the rub. Having an IBS attack makes me anxious. When I am anxious, I am more likely to have an IBS attack. There is part of that which is natural – all of us might get a dodgy tummy before a big meeting or when a gun is held to head, and after a night with your head in the toilet, you might also find yourself anxious and a little bit depressed – but my reality is so far from those natural moments we all experience, and that is the reality of which I have been ashamed.

I cringe when I have to send family and friends a long list of things I can’t eat before I visit (in the last few days I haven’t been able to stomach anything other than cooked rice!), wishing that I could be a simpler guest. I dread going out to dinner because I know that my anxiety about not knowing exactly how the food is prepared will follow me well into the night. I flush with embarrassment when I trot out an order that makes the waitress sigh with annoyance. I plan in my head if I have the right medication at home and the time the next day to be ill if I get sick following the meal. It’s humiliating to have to leave a small, crowded theatre in the middle of a show and beg the ushers to let you back in. It’s mortifying to have to go backwards and forwards to the toilet on a plane whilst the seatbelts signs are on, clambering over the man in the aisle seat, and feeling embarrassed as you pass, multiple times, the people sitting beside the toilet and the resulting smell. I get embarrassed just writing it! What does this embarrassment mean? It means I don’t leave the house without appropriate medication. It means I often work from home and have to cancel work engagements. It means I don’t eat out anymore. It means I always know where the toilets are. It means long journeys make me nervous, I don’t eat before films and theatre (just in case), and every day I wonder if I’m going to get caught out today. It has happened. It is mortifying.

But…. is it more mortifying because people don’t talk about it? Would it be easier, less stressful, and less anxiety-inducing if I could just turn around to a waitress and say “I have IBS – sorry about the list of “no-no” foods, but I don’t want to spend all night getting intimately acquainted with your toilet facilities!” Maybe if I could do that, and become less stressed about it, less anxious about how to manage it in public, it might go a long way to helping the symptoms. It’s unlikely that I will have IBS all of my life, and it’s important for me to remember that. No matter what it feels like, (and it has been about 3 years now), the stats are on my side for making a recovery someday. However, I don’t know how long the wait might be, and continuing to tiptoe around my gut isn’t good for my brain, so I’m taking a gamble on breaking the taboo.

Let’s talk about poop. Let’s talk about how it really feels to live with a chronic illness. Let’s talk about muscles that won’t work and nights on the toilet, about chronic pain and not being able to get out of bed, whatever you’ve got, let’s have at it. If being honest about our aches and pains might help us, then that seems worth a shot for me, and for others like me. So that’s what I’m doing. Starting a conversation about something that humiliates me, something that stresses me, in the hopes that by talking about it, it will become less humiliating and less stressful. As it becomes less mentally stressful perhaps, just maybe, it might just become less physically painful…

And then I might be able to eat something other than rice!

*****

If you want to chat, please do get in touch. Let’s talk about our embarrassing bodies together!

 

 

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2 thoughts on “Embarrassing bodies – Living life with long-term illness.

  1. Ah, my dear EH and your continuing journey: I applaud your courage (I was going to say ‘you’ve got guts’ … but that’s probably, no, …) , you’ve got guts!!: you keep facing up to what goes on with you in life, and now you have disclosed the IBS – you are a hero;

    … OK; figs, dried figs!; as my father in law is wont to say ‘I love ____, but they don’t don’t love me’, I could scarf a whole bag in an afternoon but once they’d worked their way through I would have the sorest arse from having to wipe so much and the having to cope with the over-acid leakiness, but can I regulate my eating of them? … you’re right, this is not easy to talk about, but I’m following your lead, and, yes, one does feel stronger when facing up to stuff in your life; I think you should declare your IBS at the restaurant – it means you are taking control of the condition/situation, and doing it unapologetically is strong; I always remember a colleague at work a while back who used to sit down in the staff room and go ‘ooh, aggh’ while shifting her seating position, adding, ‘me piles’ until she was comfy – awkward silence, but she was in charge, and she loved it; I’m going to send this now before I delete it

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