This post is a combination of a bit of a rant and some straightforward advice as to what NOT to say to someone with interstitial cystitis.
Unfortunately, all of my fellow IC warriors out there have probably been on the receiving end of at least one or two of these ignorant and often hurtful comments.
Here are 7 things never to say to someone with IC:
1. Have you tried cranberry juice? It is great for UTIs.
How many times have we all heard this uninformed suggestion? I have gotten this so many times from well-meaning friends, family, strangers and even a few practitioners. It’s extremely frustrating. Interstitial cystitis is not a bladder infection, it is a chronic inflammation of the bladder and the acidity of cranberry juice is the absolute last thing we need to be exposing our bladder to.
2. Can’t you just hold it until we get home?
No, I can’t, plain and simple. Asking someone with IC to hold their bladder can be like asking them to hold razor blades in their bladder. The urge to urinate is super strong and holding it in can cause painful spasms. When we gotta go, we really gotta go, no questions asked please.
3. The pain can’t be that bad.
Yes, it can and probably worse than you can imagine. I have been blessed to not have pain as one of my main symptoms , but I have conversed with many IC sufferers whose pain is almost always an 8-10 on a scale of 1-10 and that’s pretty severe. Unless you’ve experienced IC pain first-hand, please refrain from making an ignorant remark like that.
4. Maybe you should wear a diaper to bed.
More than one of my friends and even a therapist has suggested this to me and I had to force myself to take deep breaths to avoid a counter-attack. You need to understand that it is the urgency and pain that wake us up to pee. We are not a group of bed wetters who have lost control of their bladders. Although an adult diaper may be useful for someone with severe incontinence, it is useless for those of us who will be woken up from our sleep regardless of whether or not we are wearing depends.
5. You must have a lot of repressed anger.
I am a believer in the connection between emotions, stress, trauma and the manifestation of physical disease, but I also understand that it is not a matter of simple cause and effect. A chronic condition like IC is so multi-faceted and there are so many causative factors playing a role. It’s simply insensitive and untrue to suggest that we developed IC solely as a result of repressed anger.
6. C’mon, one glass of wine won’t hurt you!
Yes, it will! After one glass of wine I have been in a flare so bad that I have had to get up out of bed to pee every 20 minutes. That’s how much just one glass of wine can effect us. Trust me, if we could drink the wine, we would! It just makes us feel more socially isolated and out of place when we are taunted to drink the wine.
7. It seems to me like you’re taking this diet to the extreme.
I understand that for the average person, our diet can seem pretty crazy and strict. This is because a lot of us have food allergies and sensitivities that cannot only cause our IC to flare, but also cause a host of other symptoms, from brain fog to digestive distress. We have to continually refine our diet and a lot of us are quite limited for a period of time as to what we can eat. Please understand that if we could eat whatever we wanted, we would. We choose to eat this way to promote the healing of our bladders and to prevent a flare.
So there you have it, 7 things never to say to someone with IC!
Now, it’s your turn.
If you would like to share a ridiculous thing that someone has said to you that has been completely unhelpful and ignorant of your IC, please share it below!