Talking about IC with friends and family who don’t know anything about it can be hard. I struggle to find the right words to say to best describe how I feel without sounding like I’m whining or looking for pity yet also not downplaying how I feel and the impact it has on my life. It’s a hard balance to find, and I’m not sure after decades of dealing with IC that I have found that balance! But, I have compiled a few tips through personal experience and research to help us best talk about IC with others.
1. Decide how much you want to explain based on your relationship. Some people need more details than others. Some people need just a few basic facts. It all depends on whether you are talking to a casual co-worker, a family member, an acquaintance or a long-time friend. The more casual the acquaintance, the less information you need to share.
2. Have a “sales pitch” prepared. Start with basic information that you can basically recite in your sleep. It’s a good starting point for longer conversations with close people or it is all you tell more casual acquaintances. Something along the lines of: “I have an injury which affects my bladder and pelvis. It can cause a lot of frequency, urgency and/or pain. I have to be careful with my diet and activities.”
3. Use words you are comfortable with. If it’s easier for you to say you have to urinate a lot, then say that. If it’s easier for you to say you have to pee all the time, then say that. Use language that is clear but also comfortable for you.
4. For more in-depth conversation, find some quiet space. You can have a better conversation and thus explain yourself better with fewer distractions or interruptions. Most of these conversations are better one-on-one or in a setting of just two or three close friends rather than a large group. You can show them the IC Network website and/or watch some of the “Living With IC” videos together.
5. Be willing to answer questions honestly and without getting defensive. This can be tricky. If someone asks if we really get up three times a night to go to the bathroom during flares, it can be easy to get defensive and even offended. But most likely they are just trying to understand how we feel and are curious. If they persist and are being inappropriate and truly unsupportive, then end the conversation.
6. Share how IC affects your life. While friends and family need to understand IC as a condition, they really need to understand what it means for you. Tell them how you may have to cancel plans at the last minute or eat different food or sit down more than stand or avoid long car rides or anything else you deal with. Explain how symptoms can vary from one day to the next.
7. Suggest websites for more information if they are interested. The IC Network has a wide array of articles that explain IC and its symptoms for patients as well as family and friends. This can be a good resource to help your friends and family understand what you have going on without having to sit and explain it all. Even better, if someone does further research on your behalf then you know how much you matter to that person!
8. Mention how you are being proactive about treating your IC. This serves a couple of purposes. First, it can move the conversation to more positive light. Second, it also starts a proactive pattern of letting others know you don’t need a lot of suggestions about how to feel better. You are working with your doctor, doing your own research and trying treatments to find what works. It can help avoid well-intentioned (but annoying!) conversations later telling you how if you just tried drinking cranberry juice you would feel better. Cranberry products actually worsen our bladders symptoms.
9. Don’t apologize. Having IC isn’t something you asked for, and it isn’t your fault. When you’re explaining it to other people, you don’t owe them an apology for how you feel.
10. Focus on those who provide support rather than discouragement. Unfortunately, some people don’t care that much. Others just can’t grasp the idea of a life-changing health problem. Still others thrive on denial and not really acknowledging problems that exist. Do the best you can to explain IC and how it affects your life, but know when it’s time to end the conversation and turn to those who do their best to understand and support you.