Many people with urological conditions experience loss of confidence and struggle with low self-esteem. In the survey, many answers touch upon these feelings. All respondents agreed that being out in public was a source of concern, but some also worry about relationships, social life and work.
"It restricts my daily life, at work and in social activities."
"I feel down due to the fact that I can’t empty my bladder in a normal way. I’m often ill and when I’m going out or go to work I can’t relax in fear of bladder accidents."
"I feel insecure.
I question myself as a woman. It is difficult to understand and accept that I, as a woman at the age of 42, can’t control my own body."
Some of the respondents express frustration, but some have come to terms with their bladder problems, not least if they have had this situation for a long time, and especially if they have found working treatments or coping strategies.
The people in the survey are using urinary catheters for bladder emptying and we were curious about their introduction to intermittent catheterization (IC). How did they experience starting with catheters?
"In the beginning I wasn’t fond of the idea… It was time consuming to start with, but it has become a part of my life and I don’t think much about it now.
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"I started catheterizing as a child and my mother helped me. In the beginning I had trouble finding where to insert the catheter, but I practiced with a mirror, and today I do it by feel."
"I learned how to do it as fast as I could, to avoid being dependent on my mother. It gives me freedom to do what I want."
"At first, I met a nurse who was a bit insensitive, but another nurse took over and she took care of me, being very gentle and considerate. She handled this sensitive situation in a good way."
Many people with bladder problems identify medical staff as a central factor in making the introduction to self-catheterization as painless as possible. The topic might be embarrassing and the users we talked to prefer that the nurse play it down a little, but still use a respectful tone.
"It is important to have a kind person to talk to and be allowed to complain to. It is not easy for my friends and family to understand my situation."
"My bladder issues affect me a lot and anything that can restore dignity is valuable to me. To be met with respect in healthcare, and even to learn how to respect myself again, is important."
"The
knowledge is poor sometimes. You shouldn’t need to ask about the best products, the nurse should know about them and offer them anyway. It took a long time before I found out that there were hydrophilic catheters."
"I didn’t feel comfortable asking all the questions in the beginning, but I think it had to do with my trauma. I have received good support from the staff who answers all my questions – even the stupid ones, but of course I need to ask them first…
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