I have received a lot of well-intentioned comments on my being diagnosed with interstitial cystitis over the past few years. Because it’s a rare and unknown disease, most people didn’t know what to say, and quite a few of the comments weren’t what I needed to hear in the place I was in at that moment. I don’t begrudge people for trying, but I thought it might help to share a few thoughts on things not to say to someone with a chronic illness.
1. I would die if I had to live like that.
No, you wouldn’t. This one I might hate the most, because to me it sounds a little like “your life isn’t worth living.” You would adjust and adapt, and it might suck, but you wouldn’t die. Chronic illnesses can require a lot of lifestyle adjustments, particularly for ones that aren’t currently curable or treatable by modern medicine. Significantly changing your lifestyle is by no means fun, but it’s not deadly.
What to say instead: That sounds really hard. How are you adjusting?
2. Have you tried acupuncture, this doctor, this herb, standing on your head, sleeping more, seeing an astrologist, drinking dragon’s tooth tea? I have a friend of a friend who had something like that and they did this so you should too.
Unless you are a trained medical professional in that area, or you, your spouse, or child have had this disease – do not offer advice. Particularly if the disease is incurable/untreatable, because trust me, the person in question has already researched every legitimate and baloney treatment out there. There’s a pretty likely chance that the friend of a cousin of a friend you are talking about did not have the same condition anyway. Granted, this isn’t limited to well meaning friends/family/strangers – my urologist suggested I try a lemon juice cleanse. *Facepalm*
What to say instead: What are you doing to take care of yourself?
Or if you are really pretty sure you have some good advice/know someone who does: “Would you want me to ask my cousin who has the same condition for some advice?” or “I’ve heard a little about this if you want me to throw some things out there to try.” But don’t force it.
3. At least it’s not _________ (cancer, typically).
This is a big one. If you read any of this, read this one. DO NOT SAY TO SOMEONE “AT LEAST IT’S NOT….” Here’s why:
You probably don’t have a good understanding of what they are going through. With IC for example, the pain and influence on lifestyle has been rated to be on par with having cancer or being on kidney dialysis, two things which we know aren’t small potatoes. And here’s the thing, you don’t know where they are emotionally with their illness. In my darkest moments soon after getting diagnosed, I wished I had cancer. Don’t get me wrong, I am grateful I don’t and am not trying to minimize the pain of those who do. But in my head, at that time, cancer was either a) treatable, or b) fatal. When I was in the height of pain, the thought of living with that pain for the next 60 years seemed unimaginable. When I first went to the doctor with what I thought was a stubborn bladder infection that might need an extra dose of antibiotics, coming out with a lifelong illness that would never be cured was not a good feeling. Going for a screening months later that ruled out cancer, sure – finding out I didn’t have cancer then was a relief.
Here’s the other thing: you can’t compare suffering. Yes, some suffering is objectively worse than others. But when your heart is full of pain – it is full. It doesn’t matter to you that you would be able to stand more pain if something worse happened, your heart still just feels full. You wouldn’t tell a mother who lost a child at least she didn’t lose all her children. You wouldn’t tell someone who lost their house in a fire that at least they don’t live in a war torn country. Don’t try to compare suffering, ever, in any circumstance. You won’t make people feel grateful for what they have, you won’t shed a happy light on the situation, you will only make them feel guilty for feeling bad for themselves. And sometimes, it’s OK to feel sorry for yourself.
What to say instead: How did you react to the news? Were you disappointed or relieved?
4. That sucks. Hey! Did I tell you about the annoying thing my co-worker did the other day?
Pretending nothing wrong is annoying too. Someone you care about just went through a huge life changing diagnosis (or is trying to find a diagnosis for a difficult illness). Even if you don’t “get it,” offering a little (or no!) pity and then just moving on isn’t helpful either. When I was diagnosed with IC, it was like being hit with a mac truck (says someone who has never been hit by any vehicle). My life would not be the same. My husband’s life would not be the same. I didn’t know if I’d ever be able to hold a full time job, if I could have kids, if I could ever travel to all the far off destinations I dreamed of, if I could ever eat my favorite foods again, go a day without debilitating pain, go an hour without having to find a restroom, or even just live a normal life. It was a big.f-ing.deal. And so I told my close friends, who ranged from sympathetic, to confused, to a little uninterested. When I’m with people I don’t know well, I play it off like it’s an annoying allergy .”Oh yeah, I just can’t digest acid properly so no beer for me!” But the truth is, it’s way more than that. (And the diet much more serious than some fad diet!) So it can hurt when people just ignore it too.
What to say instead: Hey, I’m really sorry about that. Do you want to talk about it?
If your words are well intentioned, you won’t hurt people by them. But please, don’t try to minimize someone’s pain or to over dramatize it. It won’t make them feel better. Be there to listen and offer love and support.