What NOT to say to someone with IBD

When it comes to Crohn’s Disease and Ulcerative Colitis, a lot of people are very misinformed or have a lack of understanding about what these diseases actually are, or what they do. So, here’s 10 things you shouldn’t say to someone with IBD, for a bit of myth busting!

1) Oh, I have/my friend has IBS too, they just take Imodium and they're OK in an hour or so.

Probably the one we hear the most. I really, really need to stress that IBD is not IBS. Inflammatory Bowel Disease, is not Irritable Bowel Syndrome. They are not the same. It can be dangerous to confuse the two. While IBS has some very unpleasant symptoms, which can be similar, it is a function disorder, and is not an auto-immune disease. It does not cause any inflammation in the colon, or any lasting damage to the digestive tract. IBD causes the cells to attack themselves in the gut, causing inflammation, ulceration, scarring, and swelling in the colon. IBS doesn’t lead to harsh medications like steroids, immunosuppressants, infusions, or even hospitalisation and surgery. IBS shows no clinical signs of disease, which is why it doesn’t show in scope tests. If left untreated, IBD can be life threatening. Both are horrible, and I wouldn’t wish either on anyone. IBD is known as being like IBS x 10, and a lot of people with IBD experience IBS symptoms when in remission.

2)  Wait, you need the toilet… again?

Yes, I need the toilet again, would you prefer I do it in my pants or? One of the main symptoms of IBD is frequency and urgency for the toilet. By frequency, this can be anywhere between 0 – 20+ times a day, depending on how severe things are at the time. I’ve been bed bound and unable to leave the upstairs of my house because I was going over 20 times that day, and I couldn’t risk going too far from my bathroom. On top of the frequency there’s all the fever, pain and bleeding because your insides are so messed up, literally. It’s like having diarrhoea, but the poo feels like needles pushing through your damaged colon. Yep.

3)  But you look fine?

You’re right. I do look fine. That’s why they’re called invisible illnesses. You only really get to know what I share with you. I’m very open myself and have no problem at all getting down to the nitty gritty, but not everyone is comfortable sharing their own experiences. My illness doesn’t really affect the outside of my body THAT much, unless you count the bruises from cannula's, or weight loss/gain and dehydration symptoms. If I look OK, it doesn’t mean I feel OK, sadly.

4) Wow, you’ve lost weight! Or Jeez, she’s gained weight!

I’m sorry that my body doesn’t conform to your standards. My weight does fluctuate, a lot, and I can’t control it. I lose weight when I’m very unwell because I literally cannot keep food inside my body. I also have a very limited diet, because certain foods destroy my colon. There is quite literally nothing I can do about that. I gain weight because I’m on steroid medication long term. It makes me bloat and balloon out; not to mention the chubby moon face it causes. If I was to go through photos of me for the last year, you can see every time I’ve been taking steroids, just by looking at the shape of my face.

5) You can’t be tired already, you haven’t done anything!

If I had a penny for every time I heard this one… Chronic fatigue is a very common symptom with IBD. I don’t just get tired, I get EXHAUSTED. I can’t control it. No amount of sleep will fix it. Napping doesn’t fix it. I go to sleep, and wake up just as emotionally and physically drained as before. And equally, I suffer with insomnia on some level too. It’s like a vicious cycle of sometimes sleeping lots and being constantly tired, and sometimes getting no sleep at all and being even more tired.

6) Things will or can only get better.

I wish I could say the same, trust me. But this is a lifelong auto immune disease. It’s incurable. While you CAN get periods of “remission” where you experience no or little symptoms and the disease is “inactive”; it’s still there. It can come back at any time. I might never achieve remission. I might get worse. I might need surgery in 1, 5, or even 10 years. Things could get better, but they also might never get better, or might get worse. I need to live realistically and look after my health as best as a can, trying to avoid the worst-case scenarios.

7) I know exactly how you feel… I’ve had diarrhoea.

No no no, you really don’t. No one ever really knows what someone else is going through. We all cope with situations differently. We are all capable of different things. On top of my pretty rubbish physical health, my mental health is fairly poor, so they both seem to bounce off each other and give me a good kick in the teeth while I’m down. You can’t really “know” how much pain someone is in, how much they’re struggling, or how something is affecting them. You certainly can’t compare a common sickness, which you usually treat at home, with a lifelong auto-immune disease either.

8) You were just out with friends yesterday, you’re obviously OK.

Yes, I was out yesterday. I’m sorry that on my good days, I try to still feel normal by somewhat keeping a social life. I’m sorry I have friends. I’m sorry I’m a human being and my body needs food so I had a meal (which I didn’t eat most of). I’m sorry that I felt well enough to take some photos and upload them to Facebook, but had to leave early because I was bleeding every time I went to the toilet. Would you rather I posted the photos of the inside of my toilet and tell you how miserable I am?

9) You need to stop eating so badly, a vegan/paleo/raw food/juice diet will help.

While IBD does get affected by diet, it’s really not what you think. If there’s one thing I’ve learned, it’s how individual it can be. One things for sure, I can 100% guarantee I won’t be able to eat the majority of the diets you suggest. I have to have a low fibre, low residue diet. I can’t really eat most fruits and vegetables, nuts, pulses, or whole-wheat. They’re too fibrous and they literally rub into my damaged colon. I live off pizza, pasta, chicken, and rice. It works. I’m happy to eat a poor diet if it’s not making my disease worse. If diet was the cure, then IBD wouldn’t be incurable.

10)  It’s all in your head, you just need to be positive.

WOAH. News just in. Stop all your medication. Forget the doctors and specialists. What damage inside your intestines on your scope test? IT’S ALL IN YOUR MIND. Just be happy and it will all go away. Who would have known? Positivity fixes everything.

Yeah, I really hate to get all sassy but, these things genuinely happen. I’m super lucky that a fair few people in my life are understanding and caring. I’m aware that these get said a lot to other people too based off what you see on social media and forums. A few of them probably apply to other illnesses too. It’s a shame it’s even a “thing” to be honest. Maybe this article can inform someone and help them to be a bit more empathetic, or if you’ve struggled with similar just know you are not alone.

If you need any help or advice, check out www.crohnsandcolitis.org.uk

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