I realised that I’ve written everywhere that I’m a #spoonieblogger, writing about my ulcerative colitis, yadda yadda, but I hadn’t actually gotten to that part yet. I mean, I’ve done (and will keep doing) videos on that topic, but my YouTube channel and this blog aren’t one and the same, even if I want them to complement each other.
ANYWAY. To watch the videos I’ve done in my IBD series, click here for a neat playlist. So far, I’ve done a general video on what it’s like living with my illness, an informational video about Inflammatory Bowel Disease, and my entry for 2015’s Project for Awesome, which was for Crohn’s and Colitis UK.
Now, if you’re not familiar with IBD and want to know what I’m talking about, go watch my video on that topic and come back here – but if you’re too lazy (or can’t watch right now):
IBD stands for Inflammatory Bowel Disease, an autoimmune disease that affects the digestive system. Oversimplified, the gut gets attacked by the immune system, resulting in painful sores/ulcers and a whole lot of problems that come with them (diarrhoea, malnutrition, weakness, fatigue, … ). There are two main types: Crohn’s Disease, which can affect the whole digestive tract, and Ulcerative Colitis, which is restricted to the colon.
Because I’m basically a whiny bitch, I am going to share a few things that annoy me in particular about my illness.
ONE. People don’t take you seriously.
Be it strangers who judge you when you use the elevator for one floor, not giving up the disabled seat on the bus, or using disabled public bathrooms – or your own friends and family. People do not understand. Especially relating to fatigue, I can’t count the amount of times people who know me well have made fun of me for struggling to get out of the house before noon, or have become angry if I don’t wake up and get out of bed on time despite being woken up several times.
Particularly with my family, who are all concerned with natural dietary supplements and alternative medicine (which, not to get me wrong, I think are a GREAT thing with which to support traditional medicine and treatment – I entirely rely on supplements to support my nutrition), they seem to not take my illness seriously. I feel like they think it’s my own fault that I “still have it” because I’m just not “taking the right things”.
Which is even more annoying and hurtful than the casual “but have you tried yoga” advice you sometimes get from people.
TWO. You never feel entirely safe going out
So you wanted to go on this outing with friends? Too bad, they want to go to this obscure park outside the city, you have no idea where the nearest bathroom is, and still feel completely awkward just walking into a café/restaurant to either strut straight towards the bathroom or ask awkwardly if you can use it without ordering anything.
Also anything with typically long bathroom queues – think concerts, conventions, festivals (oh god nothing but porta-potties?? THE HORROR), clubs – is a no go. Well, not a no go. Let’s say, it goes hand in hand with an awful lot of stress and hoping your body doesn’t choose to act up on this particular day.
THREE. Staying at hostels becomes so much more complicated
On a similar note, do you have any idea how much I would love to just crash at a cheap(ish) place with shared bathrooms, if it’s just for a night or so? Yeah well. I need to be able to verify that I have access to a bathroom at all times (i.e. it’s not shared with too many other people who can occupy it), and sleeping in a dorm that only uses a bathroom in the hallway gets very annoying very fast when you have to get up around 3 times per night.
There. I don’t think I need to elaborate too much on this, but how do you casually slip into conversation that you’re chronically ill and, on bad days, run to the toilet literally all the time? Isn’t made better by the fact that it can also be triggered/exacerbated by stress/nervousness. Guess what makes you nervous?. Could it be first dates, and dating in general, perhaps? Nothing makes a new friend/potential partner feel more appreciated than when you flee the scene every couple of minutes.
FIVE. The Pain.
This one feels so obvious that I almost didn’t want to include it, but it’s what defines my daily experience. Stomach cramps, mouth ulcers, aching joints, fatigue, headaches, skin rashes … you come to cherish the good days, because most of them aren’t. I can count the pain-free days of the month on one hand. Sometimes it’s just a low-level, dull pain, making me feel like my UC just wants to remind me that it’s still there, but my standards of a “Good Day” have definitely changed.
SIX. The Glum Outlook.
People with IBD are at a higher risk for developing colon cancer – and the symptoms for this cancer are exactly the same as for the illness that you already have. Congratulations, say hi to your new-found paranoia! On the other hand, having IBD includes having regular check-ups and colonoscopies done, so if there is any change in development, we should find out early on.
Another thing that scares me a bit is the possibility of surgery. I know a lot of people with IBD who actually have a stoma/ostomy bag (hi Katie *waves*), so it’s not like it’s the end of the world, but it’s still not something that I’m looking forward to (why would it be). It’s essentially a surgery to take out part of your colon, often resulting in a stoma with a bag that’s collecting your stool. Yep. A poop bag.
SEVEN. Always feeling like you’re just throwing a pity party for yourself.
A friend of mine has MS. She hardly ever talks about it. She goes about her life as usual, seems to have absolute control over her studies and work, gets up early in the morning, is active and productive – if she is in pain, I wouldn’t know. There was actually a time where I was talking to another friend about using the elevator, and I went “Psh, I’m chronically ill, I’m allowed to be lazy”, and she replied “Dude, [Friend] has MS and still takes the stairs…”
And on Twitter I read about people whose chronic illnesses render their lives hardly livable (and still they do it – massive props to you), making me feel like the healthiest person on the planet by comparison. And then I sit there and wonder – should I just shut up?
I am incredible vocal about being ill – as I said, I’ve included it in my Twitter bio and my About Me on the blog (and wherever else I’m advertising my channels). Should I … just not? Am I just trying to cash in pity, because a lot of people have a lot more severe illnesses and you don’t hear a peep from them? Theoretically I know that we, in general, still need to work against the stigma placed upon people with disabilities or chronic illnesses, so I want to speak up and fight the fight – but where’s the balance between being vocal and letting my illness define me?
If you have a chronic illness yourself, maybe even ulcerative colitis or another IBD – I officially invite you to vent now! What sucks about it? Do you usually keep quiet because there’s “no need in whining”, or do you willingly share what’s going on behind the scenes?
What’s your approach? xx