This article is written by Dr. Masarat Jilani, a junior doctor who is passionate about challenging stigma and empowering patients through media.
Bladder issues: common but not normal
We all need to pee. Removing waste products is one the key things which all living organisms need in order to survive. Whether you are poor or rich, young or old, you need to get rid of urine multiple times a day. And problems with our bladders and urination are also massively common! Yet we don’t like to talk about it.
Bladder issues can range from common ones like UTIs and there can be some life-threatening conditions like bladder cancer. One condition which can have a major effect on quality of life is bladder leakages. Studies show that up to half of all women and a quarter of all men will experience bladder leakages at some point in their lives. It can happen at any age, but some studies have shown that only 13% of those who have the issue see their doctor about it.
Losing control over our bladders is extremely common but it is not normal, and it could be a sign of an underlying health condition. There are many ways to deal and cope with bladder leaks even if there is no underlying health condition to treat and it’s not something which people have to put up with without seeking help. Most people will have experienced some difficult situations due to their bladder whether that is having to go to the bathroom at an important moment or needing the toilet desperately and no facilities being available. Yet discussing our problems openly doesn’t come naturally.
But not talking about our bladders can have serious consequences... it can lead people to suffer in silence. Others may convince themselves that something is normal when it is not! A lack of knowledge means people may not understand how to keep their bladders healthy and not realise when something may be seriously wrong.
Our bladders are amazing
When our bladders function well, they allow us to control when we pee. This means we can sleep for hours and our bodies will simply store urine until we wake up and are ready to use the bathroom. They are stretchy and most bladders can hold up to 500ml at a time- that’s equivalent to a can of drink!
Urine is also very important. And something which even fewer people like talking about. Urine allows our body to stay in balance by removing excess salts and water which we do not need. Many people see urine as dirty. But, did you know that urine contains very little bacteria? It only collects bacteria which lie on our skin once we expel the urine from our bodies. You know when the doctor asks you to provide a urine sample from the middle of the stream? That’s why!
In fact, if you have too much bacteria in your urine, it could be a sign of infection or other health conditions. Having smelly urine can also be a sign of infection but normally urine only has a faint odour. Over time urine can develop a more pungent smell but this is due to reaction with substances outside the body. By not talking about our bladders or our urine we end up not knowing what is healthy and what is not, and we can start to believe rumours or myths about our bladders which are not true.
Stigma, Taboos and Shame
Patients feel shy, embarrassed and ashamed to talk about how their bladder issue has affected them. For the people that go to the GP surgery, they’re the minority who have had the courage to come and talk about it. But why are so many people so reluctant to seek help? The answer is stigma!
People have often been shamed about their bladders from a young age. Julie* shares the story of how she had wet herself as a child and her father became extremely angry and shouted at her - this ended up affecting her throughout her life. Sam* was forced to wear nappies by his parents as punishment following an episode of bed-wetting and this led to him experiencing such a strong stigma that even now he “would never tell his friends he was incontinent”.
Experiencing shame and being shamed about bladder leakages from a young age can affect us throughout life. It can cause a reduction in self-esteem and make people feel isolated and unworthy. This can lead to denial. All these feelings contribute to people feeling too ashamed to seek help.
Other people have spoken about the shame they felt when they had to use incontinence underwear or diapers- how people told them that this was not something an adult should be wearing. Feeling undignified or out of control due to your bladder issue can make you feel less accepted by society. However, this should not be the case. As Jamie* described it, people are not ashamed to wear glasses or use a hearing aid yet wearing a diaper or incontinence underwear should not be any different. He felt pride at wearing his incontinence underwear because “if someone notices it, they will see that I take care of myself”. Taking measures to give yourself the independence to live your life is something to be proud of!
The psychological impact: a second illness
50% of people with OAB suffer from anxiety and 20-40% of people with bladder leakages may be depressed.
Due to the stigma, suffering with incontinence and other bladder issues can be mentally taxing. Some people describe this as a second illness which burdens them on top of the medical issue. They often spend hours planning outings to ensure there is easy access to toilet facilities and worrying about small details of the day. Many people also end up dealing with the issue secretly – hiding it from family and friends and trying to carry on as normal. This can lead to anxiety and depression. Up to 50% of people with overactive bladders were shown to suffer from anxiety in some studies. Anxiety can manifest in constantly checking that you are dry, making sure you have changes of underwear and developing fears for new social situations. Studies show between 20-40% of those with bladder leakages may be depressed. Depression can lead to isolating yourself from friends or family, not participating in activities you used to enjoy and even losing your appetite. But there is help out there and the first step is to start talking.
How can we start talking about our bladders? Next week’s instalment of this blog will be talking about how to keep your bladder healthy. You can join in the conversation by commenting below or messaging us on Instagram, Twitter or Facebook.
It’s also important to talk about your bladder or bladder issues to anyone you feel comfortable talking to. Below are some tips on how to talk about it to three key types of people to help you look after your bladder health and challenge the stigma.
How to talk to children about bladder health
Talk to your babies when you are changing their nappy so they can learn key words
Allow your child to talk openly about peeing and to be curious
If children have accidents during potty training, remain calm and empathetic. Do not become angry or upset. Let them know it’s okay to have an accident and it’s not their fault.
Allow your child to ask questions and answer them honestly
Teach girls to wipe from front to back to reduce risks of infection
How to talk to your doctor
Remember your doctor will likely have helped many people deal with incontinence, so it will not be something new for them
Opening up about your bladder issue may be hard so you may want to practice what you will say. “I am having bladder leakages”, “I keep having to pass urine many times a day”, “It stings when I pee”
If you find it particular hard to say out loud, you can hand them a letter with it written down
Doctors appointments can be short so you may want to prepare questions to ask and write them down so you can remember
They may want to perform a physical exam, so be prepared to expect this but remember you can also refuse an intimate examination if you find it uncomfortable and your doctor should talk through alternatives.
Be proud of yourself for having the confidence to discuss the problem and starting the path to getting help and looking after your bladder!
How to talk to your employer
Remember that you have a right to be treated equally and should not be discriminated against because of your bladder issue
You may want to reach out and talk to a support group before you talk to your employer. You can always reach out to the Provie community
If you need adjustments made at work to accommodate you, your employer has a legal obligation to help
You can get a fit note from your GP which can recommend some adjustments to allow you to work best
It’s up to you how much you want to tell your colleagues- you can keep it vague if you want
Together we can end the shame, share the burden and have healthier bladders!
We would love to hear from you! Do you have any tips on how to keep your bladders healthy? Do you have any stories you would like to share about how your bladder has affected you? Do you have a story about how you may have felt ashamed because of a bladder issue?
You can share your story anonymously by messaging or emailing us or you can tag rovie.co if you decide to share a post on social media. We are here to support you, hear your stories and lead the conversation on how to have a healthier bladder. *All user recounts are real but names have been changed to protect their identity.