I know this topic isn’t particularly new ground to tread. However, as I’ve personally been pretty unwell lately and have encountered almost all of the following phrases, I felt a wee refresher was overdue. For that reason, I’ve compiled a comprehensive list of the nine things I believe people with chronic illness do not want to hear.
1. “But you don’t look sick.”
(See also: “You look great! You must be feeling better!”)
The above phrase is often number one on lists of things not to say. I believe it’s the most infuriating thing anyone can say to anyone with a chronic and invisible illness. The frustration at these five words mainly stems from what I believe it insinuates, which is that you, as the patient, may be either lying at worst or embellishing the truth at best. After many years of suffering from Crohn’s disease myself, I’m still not even sure what the correct response should be.
It’s difficult when we, as patients with invisible illnesses, have to attempt to express how much unyielding agony we are in under the surface, when the outer shell looks like you’ve just stepped out of a Maybelline commercial. Pain and a plethora of other symptoms can strike at any time, completely unexpectedly in some cases, and without warning, so please don’t assume the packaging matches the product within without all the facts.
So what to say instead? How about asking about our disease if you don’t understand and would like to? Or saying nothing at all is just as good.
2. My friend/colleague/family member has it and she’s coping really well…/really badly…”
(See also: “You just need to learn how to manage it.”)
It’s a human instinct to share experiences and knowledge. Having things in common with others is one of the quickest ways to build a bond, so I understand why those who hear that patients have IBD (inflammatory bowel disease) have an urge to share what they know about it. However, in my experience, these nuggets of information from non-patients are often harmful to our states of mind. In the case of a comment implying someone they know is doing better than you, I believe it almost implies we aren’t quite trying hard enough. In the case of hearing horror stories about someone they know doing much worse, it can lead to panic, massive anxiety and uncertainty about the future.
So what to say instead? “My friend also has this. I’m always up for learning more about the condition so I can help you both!”
3. “You’d feel better if you just relaxed/took a holiday…”
(See also: “I read about some alternative therapies. Have you thought about trying…”)
There likely isn’t a treatment or potential medication left unturned in our quest for intestinal normality. But our illnesses regrettably don’t have a cure. Comments like “take a break” don’t always help. We’ll still have an incurable illness. We’re not trying to be negative, just realistic.
So what to say instead? “Wish you could get a break from your illness!”
4. “Why are you always tired?”
(See also: “Everyone gets tired.”)
Prolonged fatigue is a common symptom of most chronic illnesses. Fatigue isn’t “just” tiredness. It’s intense and unending exhaustion. No amount of sleep is often ever enough to shake it off. A nap or an extra hour in bed here and there just won’t cut it. When people question this utter exhaustion, it’s both upsetting and infuriating. We know everyone gets tired, but not everyone has everyday life to deal with and a chronic illness at the same time.
So what to say instead? “Anything I can do to lighten your load?”
5. “You just need to make some changes to your diet.”
(See also: “Should you be eating that?”)
Please don’t tell us what/where/when to eat. When we can enjoy a meal without a hint of pain or nausea, it’s like we’ve reached Valhalla. Food and drink and IBD patients can have a love-hate relationship. When we can eat, we can be utterly and almost instantaneously floored by incredible abdominal pain, or find ourselves getting up close and personal with the porcelain for the remainder of the evening. Concern about our diets is natural for those who care about us, but it’s important we don’t feel under scrutiny whenever we are eating in company.
So what to say instead? “What can I make you to eat?”
6. “It will get better, just be patient.”
(See also: “You’ll feel better after meds/a good meal.”)
Again, the incurable part rears its ugly head. We won’t ever “get better.” We may at some point feel healthier than when we’ve been at our lowest medical ebb, but time won’t heal IBD. It’s not a cold or flu where in a few days we will be fighting fit again.
So what to say instead? “I hope you start to feel a bit perkier soon”
7. “Are you in the bathroom again?!”
(See also: “Must be great to get some many extra breaks!”)
IBD patients don’t actually want to spend hour after hour in excruciating agony, clinging for dear life to a radiator or a sink or whatever is closest to hand. We aren’t actually hiding in there; we are forced onto the porcelain throne through no fault of our own.
So what to say instead? How about no comment at all? Or perhaps a gentle question as to whether there’s anything you can do?
8. “You’re too young to be sick.”
There is no age restriction on illness. According to the Crohn’s and Colitis Foundation of America, most people are diagnosed with IBD before age 30, but like other chronic illnesses it can strike any age at any time.
So what to say instead? “I feel for you!”
9. “It could be worse…”
(See also: “You should consider yourself lucky.”)
Most people know that things could always be “worse.” I’ve never been sure what it’s meant to instill in the recipient: grace, embarrassment, silent reflection?
So what to say instead? Nothing. How about a hug?
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