As any Crohn’s or Colitis patient will tell you, our illnesses can be pretty misunderstood and to be honest, I could probably write a thesis about all the annoying or patronising comments I’ve heard over the years to do with my Crohn’s. But for now, I have compiled a list of the 30 most ignorant and irritating. If you yourself have a chronic illness, you will hopefully know exactly what I mean and if you don’t, well consider this a manual of all the things NOT to say to someone with a chronic illness. So, in no particular order, let’s begin!
1. You need to be more positive
I had a friend who thought all my problems would be solved by just “thinking positive”. Though this is a well-meant comment I’m sure, it is entirely unhelpful when we are having a rough patch with our chronic illness. It almost feels like we have no right to be down and that the person saying this is instructing us on how we ought to feel about the situation. No thank you.
2. It’s such a shame that you have that, you were so smart
This was a comment made by grandparents when I was first diagnosed, and it actually really offended me. Number one, its not a “shame” to have a chronic illness. Number two, my brain cells didn’t automatically die when I was diagnosed with Crohn’s and I’m still the same exact person as I was before. And number three, although life is tough, my illness does not necessarily mean that I can’t or won’t achieve my goals. So, kindly don’t patronise me.
3. Oh no, don’t say that
I am usually the kind of Crohnie who plays down their symptoms to make other people feel less uncomfortable or to avoid being seen as the one who always complains. But, on the odd occasion when I actually want to discuss how I feel physically and mentally, I would rather people didn’t respond by saying “oh no, don’t say that” or “you’re breaking my heart” etc. Being honest about how we feel is the only way anyone else has a hope of understanding us. I don’t want to have to filter my emotions to make you feel less awkward. Sorry, but not sorry.
4. I feel so bad for you/ You poor thing/ That sucks
The very last thing someone with a chronic illness wants is your sympathy, it just makes us feel even worse about our situation. Leave the pity at home please.
5. But you look fine
It’s called an invisible illness for a reason people. Just because you can’t see it, doesn’t mean we can’t feel it.
6. Is it contagious?
Why don’t you come closer and find out?
7. At least it’s not cancer/ It could be worse
Another well-meant but entirely unhelpful remark. Is this supposed to make us feel grateful that we have to spend the rest of lives battling with a debilitating illness day-in and day-out? One illness is not comparable with another, we have our own struggles to deal with, thank you.
8. But you were fine yesterday
Another thing people don’t seem to understand about chronic illnesses is how temperamental they are. One day we might be feeling fine, the next we can’t get out of bed. Understand that things are very changeable and that we can’t help that.
9. Just get some rest
Another regular comment from the person who tries to instruct us on how to deal with our condition. As much as I would love a good night’s sleep, I highly doubt that I will wake up in the morning and be cured.
10. I’m sure it will all work out in the end
There is no end. That’s why it’s called a CHRONIC illness.
11. When will you be better? / Will you be okay by March 1st?
Again, the word “better” is relative. We can be “better” than how awful we have been feeling, but not “better” in the sense that we’re suddenly fine. Also, there is really no point in asking us if we can do particular dates or making plans well in advance, we simply cannot know how we will be feeling and we don’t want to disappoint people by making promises we don’t know that we can keep.
12. You’re so flaky
Don’t make us feel bad for having to cancel plans, we feel guilty enough already for continuously letting people down and sad that we have to miss out on so much. If you’re friends with someone with a chronic illness, you need to respect that things can change at the last minute and that we don’t always feel like going out.
13. Have you tried…?
Yes. Next.
14. I have a friend who has that, and they’re fine…
Good for them. Just one problem, they aren’t me. Every chronic illness patient is different, so don’t bother comparing one case to another- it’s pretty futile.
15. I know how you feel
Nope, not even close. Period. If you haven’t heard the following quote before, then you should learn it. “Chronic illness: You don’t get it until you get it”.
16. I’ve come out in sympathy with you
I really hate that phrase. Just because you have a 2-day stomach bug, you’ve got food poisoning or you ate chilli con carne for dinner last night and it didn’t agree with you, it does NOT mean that you can compare yourself to me. A temporary and mild upset tummy that 99.9% of the population will get at some point is hardly “coming out in sympathy” with a Crohn’s patient who suffers from life-limiting symptoms every day for their whole life.
17. You can’t drink alcohol? How do you live?!
Okay, if you are honestly asking me that question, you probably have more problems than I do. Also, considering what I go through on a daily basis, drinking alcohol and getting smashed isn’t really on my list of priorities.
18. You’re so lucky to be so skinny/ You’ve put weight on
Just stop with the weight-related comments. Seriously. IBD patients in particular have little control over our weight. We might put weight on due to life-saving medications like steroids, or we might lose a whole a bunch of weight because of a severe flare. Just be sensitive and don’t highlight the fact, it only makes us feel more self-conscious.
19. You can eat that but not a salad, yeah right!
IBD diets are confusing. Everyone is different and the general “healthy eating” rules no longer apply. In the past I could eat a burger, but if you gave me a salad it would NOT end well. We are food enigmas, get over it and let us do our own thing, we are under no obligation to make sense!
20. Just try some, a tiny bit won’t hurt
That’s where you’re wrong, so, so wrong. I once got knocked out for over 2 weeks by a 10p sized Walker’s sensations crisp because of the flavour. A lot of IBD patients have restricted diets and the stakes of breaking that diet are very high, even putting some people in the hospital. So, if you’ve ever said this to an IBD patient before, let them be and don’t try and coerce them into making themselves even more ill.
21. You’re just choosing to eat those things, it’s not that you can’t
This is actually an argument I used to have with my dad a lot. He didn’t seem to grasp that having Crohn’s isn’t a lifestyle choice. I mean, come on. Define “can’t”. If you mean can I physically put the food into my mouth and swallow without dying, then yes, technically I can eat whatever the heck I want. But it might put me in the hospital or ruin my treatment. To me, putting myself in a significant amount of jeopardy by eating something justifies saying that I “can’t” eat it.
22. Do you want some? (Whilst evidently on a liquid diet)
Now this one is aimed at people who know the person with the chronic illness well and know that they are on a liquid diet. Honestly, the amount of times I have been on a liquid diet for months and then my dad has ignorantly asked me if I want some pasta for dinner. Um, hello!? Yes, of course I want some pasta, but in case you hadn’t realised by now, I CAN’T EAT ANYTHING. It’s called EEN for a reason: EXCLUSIVE enteral nutrition i.e. no food, nil, nada. I would have thought the 2 months of missed mealtimes and the vat of Fresubin in the fridge staring you in the face was clue enough.
23. I’m hungry/ I’m tired/ I have a cold etc.
Maybe I’m just cynical, but I always find myself biting my tongue in public when people spend endless amounts of time whinging over these trivial things. You’re hungry? I haven’t eaten anything for 4 days because the only way I can travel is to starve myself. You’re tired? I haven’t had a full night’s sleep in over 8 months because my Crohn’s is flaring which means I’m in constant pain and have to keep getting up in the night to use the bathroom, plus I suffer from chronic fatigue permanently. You have a cold? Boohoo.
24. I had a blood test this morning and it was so traumatic
I remember one girl who was a particular drama queen who came into school one morning with an obnoxiously large plaster on her arm which she waved about for a good few hours shouting about how painful and traumatic her blood test was just to get attention. That brought her total “traumatic” experience count to 1, mine to 1000000000. And that doesn’t include colonoscopies, scans, EUAs or surgeries. Enough said.
25. You’re too young to have arthritis
Newsflash! There isn’t an age limit on chronic illness. I first started to suffer with enteropathic arthritis when I was about 15/16 years old and I don’t need you to verify that.
26. Why are you always so pale? You should go out in the sun more
To answer your question, I have iron-deficiency anaemia. And no, I most definitely should not go out in the sun more unless I want to get skin cancer from my lack of immunity.
27. You can’t let this take over your life
This one really stung. A district nurse said this to me while I was lying half-dead and unable to move on my sofa after my second fistula surgery while she packed my wounds. I felt like saying: “I’m not letting anything happen. Having a chronic illness isn’t something I let happen to me. It just happened. I have no control. None. Its really hard accepting that I can’t do what other people can, so I would really appreciate it if you didn’t make it sound like it was my fault.”
28. It’s all in your head
No, actually it’s in my oesophagus, my stomach, my small bowel, my colon and my rectum.
29. You’re so brave and inspiring
People like to think they are paying you a compliment when they say things like this, but honestly it doesn’t feel that way. It’s not like people with an illness have any say in the matter; we have to fight. We have to go on no matter how bad things get because what other option is there? Plus, chronic illness is not something to be glorified, believe me it’s not a glamorous daily life, and building us up like this makes us feel inadequate when we are having a down day and it all gets too much.
30. “WE”/ “US”/ “OUR”
To conclude, I would just like to warn anyone who is supporting someone with a chronic illness about using plural pronouns. It’s not “our” appointment, it’s mine. It’s not that “we” struggle on a daily basis, it’s that I do. I get that you’re trying to be supportive and make me feel less alone, but please don’t try and lump us both into one category. I’m sick and you’re not. To me, that’s as bad as a man saying: “last week we had the baby”. Unless he went into labour and gave birth too, then there was no “we” involved.
Me and My Crohn's 