An invisible illness: how other people react

I have flare ups reasonably regularly, but from the outside you can’t really tell. Unless you’re privy to my bathroom routine, have super hearing for the grumblings of my stomach, and document how much I have eaten that day, then from the outside I don’t look ill. And that’s why my illness is invisible. There are many invisible illnesses out there, and it basically means you cannot tell someone has a disease or disorder just by looking at them; they could look entirely ‘normal’ and healthy externally, but internally, their body and/or mind is waging war on itself. Internally, they may be very sick indeed. My illnesses are not obvious to those around me, and so it can make certain situations sometimes difficult to deal with.

Food can sometimes make me feel awkward.

Like a normal person, I have to eat things. Unlike a normal person, I have IBD. It’s hardly a revelation to say that there are some thing I just have to avoid, or at least eat in small amounts. Some food are just very difficult to digest anyway, or contain too much fibre (think sweetcorn, mushrooms, beans, cereals), some just enrage Greg due to the way it reacts (spicy things for example), some are because of the chemicals/ingredients they contain (pringles 😦 ), and some just don’t seem to make much sense (I have a problem with peas, but we don’t know why). These are the things that I tend to just cut out of my diet in the general day-to-day, but whilst myself and some others are used to this, not everyone is. I’m one of those people who is often quite open about what I can and can’t eat, and all the people who know me are perfectly aware of what I’m doing when I obsessively pick peas out of my meal, and my partner and I now swap foods on our plates without even pausing conversation. But sometimes, I do feel embarrassed. If I’m at someone’s house for the first time and they’ve made me a lovely meal, I feel incredibly rude to then pick apart that meal. If I am out at a restaurant, I feel like the difficult one when I order something off the menu and then amend about 3 or 4 different parts of it. The server can sometimes look a little aggravated, and in large groups, it feels like all eyes on me, especially if not everyone know why I’m doing it. The number of times I’ve heard the term ‘picky eater’ muttered under someones breath is beyond believable, and although I’m used to it,  it can still stab rather deep. I’m sorry that I have a life altering disease that means eating for me is not nearly as simple as it is for you. Why don’t you ask me instead of just presuming, and I will more than happily tell you all the gory details.

Don’t get me started on alcohol.

You’ll usually find with IBD sufferers that alcohol is a big no-no. Some people can’t drink at all, and some can only drink a bit (and yes, some sufferers have no problem). I was at the none-at-all end of the spectrum before I went to uni, and through a shit-tonne of experimentation and a lot of pain, I basically built up a tolerance to a few types of alcohol. I can now drink wine and a few different spirits, but dear god, keep me away from beer. I mention alcohol because, especially for someone like me who for the past 3 years of her life has been in an alcohol soaked environment, people seem to have little tolerance for those who can’t drink. I have to admit I think we have a problem in the UK where ‘going out’ means getting absolutely shit-faced, and if you can’t drink alcohol, then it must mean that you’re a boring arse who doesn’t know the meaning of fun. The amount of people who looked bewildered when saying the words ‘you go out…sober?!?! But…no…how…why?!?’. I’d explain it made me ill, and I’d get the look of ‘alcohol makes everyone ill’. If I had the willpower to explain further, this then turned into absolute sympathy, not for my illness, but for the lack of alcohol in my life. Is it that hard to consider that I didn’t actually care? I know how to have a good time without drowning myself in chemicals (more than what could be said about those who refused to understand), and although sometimes I do enjoy a drink, I also know what is good for me, personally. So what if what I’ve drunk is ‘lightweight’ to you, if I have anymore, you can be the one to carry home and watch over me at night while I toss and turn in agony. It all comes down to pressure, and a somewhat unhealthy societal view on ‘having a good time’. You don’t know my reasons behind why I’m doing what I’m doing so don’t judge me or pressure me or try to coerce me. Don’t tell me that ‘alcohol gives you a mean hangover too’, because that’s basically you telling me that you haven’t listened to anything I’ve just said. It’s fine for people to sympathise and empathise with me, but when you do it an obnoxious way that completely misses the point, it’s no longer nice, just condescending. Whatever anybody’s reasoning for not doing something, it is not yours to reason why, or judge them. Just accept and then get on with your night out, it will be a lot more fun that way.

It can also work the other way.

This one tends to happen from loved ones and close friends, and I’ve come to recognise it just as a form of over-concern and care. Whereas sometimes people question when I don’t do something, others can question when I do. Take alcohol for example again. When I do drink, others can become too concerned for how much I’ve drunk, what I’ve drunk, and how Greg is. Same with food: ‘should you really be eating that?’, ‘isn’t it just a little too spicy?’, ‘you’ve never had that before, do you know you’ll be okay?’. For starters, thank you for looking out for me, thank you for trying. Secondly, back the fuck up. This is my body, and funnily enough, I know it better than you. I know when to stop, I know what I can drink/eat, and to be honest, if I go overboard then that is my problem and I will just have to live with it. I know you are trying to protect me, but if I tell you to cut it out and to trust me, then well…trust me. I do know, I’m not always stupid. And please, whatever you do, don’t act disappointed in me for making these choices. I just learnt in my training, that as long as someone has capacity to make decisions, we can only encourage against it if we think them wrong. We are not allowed to forcefully stop someone, nor are we allowed to make them feel awful for doing whatever it is they are doing. This is in the same vein; you can encourage me to change my mind (if I do, great! I probably would have done so later anyway), but if I don’t change my mind, then accept that it is something I want to do and go from there. I know this doesn’t follow the same concept as having an invisible illness, but (to me, at least), this can be just as annoying as when people are obnoxiously ignorant. I know it can be very easy to go overboard on the protecting front, but for anyone with any disease or disorder, don’t try to inhibit their independence, rather follow their lead and by all means, keep them safe within their own choices and parameters.

Disabled loos.

You may have seen about a year ago a blog post titled ‘To the woman who tutted at me using the disabled loos…’, written by the wonderful Sam from sobadass.me (find it here: http://www.sobadass.me/2015/02/17/) This blog post sums up basically the stigma of an invisible IBD. I can tell you, if I suddenly need to go to the loo and there is a queue, you do not want me standing behind you hopping up and down, grumbling,and moaning. You may raise your eyebrow at me for using the disabled loo, but you’d probably do more than that if I shit my own pants right in front of you. I won’t go into this too much as I can’t say it better than the blog above, but by god, trust that I have a reason to be running past the queue into the disabled toilet. No, I am not being inconsiderate and no, I do not *look* disabled. Funnily enough, disability comes in many many forms, mine just happens to be on the inside.

Have you tried x, y, and z?

I have a chronic lifetime illness not a slight cold, and honestly, if your smoothie mix of jujube berries, kale, and flax seeds was a miracle cure, the doctors would have been the ones to tell me years ago. If becoming a vegan was my only choice then I wouldn’t be tucking into this bacon sandwich now would I? If this ‘magical’ vitamin tablet that you just produced from the depths of your bag was an end-all for my illness, then what the hell are you doing keeping it hidden in there? If cutting dairy or meat or sugar out of my diet did the trick, then honestly, I’d just live with my crohns because no way in hell am I giving up cheese, sausages, or cake. You get the idea. The doctors know what they’re doing. I know what I’m doing. Stop telling how my ‘icky tummy’ is just cos I’m not getting the right vitamins and minerals in my diet, or how I’m eating too much fast food. Stop suggesting I try a new fad because ‘it helps to regulate your system and align your body’. No, fuck that, I tried yakult and actimel and I ended up sitting on the loo for what seemed like an eternity afterwards. If what you’re offering me is worth it’s salt, then chances are I will have already tried it. Unless you come to me with real statistics and a fact sheet about how it helps those with crohns or colitis, then please just take it away from me before I shove it up your arse. And if you’re going to offer me something proven to help IBS, then prepare yourself for an indepth lecture about why THEY’RE NOT THE SAME THING. Your ‘helpfullness’ is not always helpful, and when I say I’m not interested please don’t take it as a personal dig, I just know what is best for me.

A lot of these behaviours I believe come around due to lack of understanding and knowledge. Also, I have to say that I do think that we have quite an intolerant society when it comes to things that do no fit into a ‘blueprint’; if it doesn’t look like what we believe that typical thing would look like, it is obviously not that thing. We’re quite set in our ways and stubborn about changing our own views, but I implore everyone to perhaps think a little deeper about why people may do what they do. As the famous quote says ‘be kind, for everyone you meet is fighting a hard battle’ (most commonly attributed to Plato), and quite often this ‘hard battle’ is something you are not privy too. It may be invisible, it may not, but as previously mentioned, it is not yours to reason why or to judge. If we all became a little bit more tolerant and aware of the factors that may be causing someone to behave the way they do, then the world we live in would become a much nicer place to be – not just those of us with hidden illnesses, but for all. Think about how what you say or how you act may affect me. Just because I don’t ‘look ill’, doesn’t mean I’m not. I think that’s rant over now.

Until next time, thank you.

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3 thoughts on “An invisible illness: how other people react

  1. genewarsattackofthecrohns March 18, 2017 / 2:42 pm

    I’m on a drug called HUMIRA which I have found helps me but it’s not for everyone.
    It can be used to help with your type of IBD but I have found the price I’ve had to pay is constent recurring infections particularlyin my eyes. But I have no choice is that or back on the operating table with in a few years. But it might be worth checking out with your Doc.

    Like

    • jazzc36 March 18, 2017 / 3:02 pm

      Ohh thank you, that is definitely one to keep under my belt in future. I recently started on Azathioprine, which seems to be working alright with me currently and has helped with the intensity of my flare ups.
      I hope you are okay though, and it truly sucks the side effects of drugs that are there to help us function. I am glad HUMIRA is helping, and I wish for you that you stay well for the future.

      Liked by 1 person

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