Getting emotional support
BPS/IC can be extremely challenging to live with and so, it’s easy to feel misunderstood, especially if finding something which works for you is proving quite the challenge. It’s important to know you’re not alone and there are others who know what you’re going through. Read on to see what other sufferers of BPS/IC have said about their condition:
“It's like somebody is taking a sizzling hot cattle prod and sticking it in your bladder.”
“I love going to a theatre, but it's to the point where I can't sit through a movie.”
“I haven't changed my job, because I don't know what job I could do where I could have my IC and function in the job.”
They find the inability to predict the course of the disease and its potential progression extremely unsettling.
“At some point you’re just gonna have a flare that’s so bad that the current treatments for it don’t work and then, what do you do?”
This uncertainty and unpredictability of suffering can make them reluctant to plan for the future.
“I’m getting older… I worry, you know, because I’m not a person who would walk around with one of those external bladder bags.”
It can also can make them feel isolated and not fully understood by family, friends or employers.
“They don’t really understand when I’m in pain… it’s just like, well, mom, how am I gonna get to school?”
As BPS/IC flares can be exacerbated by foods and beverages such as alcohol or caffeine, maintaining social relationships with friends and family can also be particularly difficult.
“My friends… they love to enjoy life and when you can't go out to dinner… it can be difficult to maintain those relationships.”
Sexual intimacy, an important part of many relationships can be a struggle.
“I think we’ve probably all had times where we were hurting and we just kind of went through with it anyway and, you know, paid the price.”
Some patients even expressed a lack of understanding from their doctors.
“Then they kind of treat you like you're a hypochondriac. I am not a hypochondriac and my doctors should all know that because every time that I have complained about something repeatedly it has always turned out to be something.”
All of which can cause serious depression.
“I think the last full flare that I had, I really contemplated ending my life. It was so miserable.”
So, if you think you might be suffering from BPS/IC, don’t think twice about speaking to your doctor to get the medical, physical and emotional support you need.
