Cookies notice: This website uses cookies. By continuing to use this website, you consent to our use of these cookies. You can find out more about how we use cookies and how to manage them by reading our Cookie Policy

Continue
Disclaimer: The material provided in this website is for information only, it’s not medical advice or instruction and any information you consider should be discussed with your physician.


So, what’s the psychological impact of recurrent and chronic conditions?

Chronic diseases can be life changing and debilitating, the lack of understanding of the pathophysiology of certain recurrent and chronic bladder conditions as well as the difficulty in finding a successful treatment or cure makes them feel like it's “…a life sentence.”

Patients suffering with the chronic condition BPS/IC describe the pain it causes and its negative effect on daily living, travel and the quality and duration of sleep.51,57

“It's like somebody is taking a sizzling hot cattle prod and sticking it in your bladder.”57

“I love going to a theatre, but it's got to the point where I can't sit through a movie.”57

“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.”57

They find the inability to predict the course of the disease and its potential progression extremely unsettling.57

“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?”57

This uncertainty and unpredictability of suffering can make patients reluctant to plan for the future.57

“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.”57

It can also make them feel isolated and not fully understood by family, friends or employers.57

“They don’t really understand when I’m in pain… It’s just like, well, mom, how am I gonna get to school?”57

As BPS/IC flares can be exacerbated by foods and beverages such as alcohol or caffeine, maintaining social relationships with friends and family was noted to be particularly difficult.57

“My friends … they love to enjoy life and when you can't go out to dinner… it can be difficult to maintain those relationships.”57

Sexual intimacy, an important part of many relationships can also be a particular struggle.57

“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.”57

Some patients even expressed a lack of understanding about their condition from their doctors.57

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.”57

All of which can cause serious depression.57

“I think the last full flare that I had, I really contemplated ending my life. It was so miserable.”57

It’s hard for patients to cope with these types of feelings, so it’s important to take the time to listen to them and recognise their frustrations. Helping them to understand their condition is also key to managing it and their expectations. This kind of open and honest communication helps to ensure the optimal treatment choice, and an overall smoother experience for both you and your patient.

Many patients also benefit from ongoing emotional support, to avoid feelings of isolation.

Find out more about

organisations that can help

References

  • 51.Tirlapur S, Birch J, Carberry C, et al. Management of Bladder Pain Syndrome: RCOG Green-Top Guideline No. 70. Vol 124.; 2016. doi:10.1111/1471-0528.14310.
  • 57.Kanter G, Volpe KA, Dunivan GC, et al. Important role of physicians in addressing psychological aspects of interstitial cystitis/bladder pain syndrome (IC/BPS): a qualitative analysis. Int Urogynecol J. 2017;28(2):249-256. doi:10.1007/s00192-016-3109-2.

© 2018 Bladder Smart. Financially supported by Mylan