Addressing the Stigma around Incontinence

Stigma is all around us, in one form or another. It is strong, yet invisible and has the potential to control us beyond what is reasonable. First of all let’s define the concept of stigma in the context of bladder and bowel health, so that we can start to explore the topic.

Simply put, the definition of stigma is:

‘A set of negative and unfair beliefs that a society or group of people have about something’

In this article, we’re exploring the stigma around bladder and bowel conditions, which most often involves incontinence. The word ‘unfair’ in the above definition is key, as it implies that the beliefs are unjust. After all, if you live with a bladder or bowel condition it’s not your fault, and with 14 million people in UK living with a bladder problem, you’re certainly not alone.

What is stigma? How is it different from taboo?

While stigma is defined as a negative set of beliefs within society, taboo is slightly more prohibitive. A taboo may be more extreme, and refers to behaviours or states that are imposed by a set of rules, often associated with religion or social group. Put another way, a stigma might refer to an attitude towards a person, whereas a taboo might prohibit such an attitude from even being discussed.

The power of these two concepts in society can be huge, and can divide people unfairly.

What does Stigma have to do with bladder or bowel health?

At Bladder & Bowel Community we often refer to people’s health as a ‘journey’ and we mean it quite literally. Our health isn’t static, it doesn’t sit still to wait for things to happen – our bodies are constantly evolving, and depending on our lifestyle or medical interventions, at different rates. 

If your healthcare journey involves a bladder or bowel problem, it often starts with a feeling of shame. But why is that? We can feel shame as a result of not feeling attractive or ‘normal’  which is a core human trait. We have an evolutionary desire to be perceived as attractive to find a life partner, start a family, and succeed in life. If that self-perception is challenged with something less desirable, for example, a bowel disorder, we can feel shame.

This is a basic human instinct to do with hierarchy, and therefore survival. But in modern life, our societal rules are (thankfully) much more complex and we need to adapt our minds accordingly. How we think about ourselves, and how we treat others, matters.

On the one hand we can ‘protect’ ourselves from stigma or ‘negative beliefs’ by keeping our health private from others. On the other, we can accept that others may be open, but not understand yet, and your health is something you may need help with – which means being more open to conversation.

Stigma around Incontinence

What we tell ourselves is important

The important thing to remember is that our minds can be trained in a more positive direction –  what we tell ourselves is important. If we instil that feeling of shame, it can get worse. If however, we accept and love our bodies as they are, however they function, that feeling of shame can be controlled and self-worth rebuilt. This is much easier said than done, but if what you’re feeling is having a negative impact on daily life, it may be worth speaking to a mental health professional to help you process things. 

Consider, whether you have a close relative or friend you feel you can talk to about this. Or if you rather maintain privacy and speaking to a mental health professional sounds like a good idea, remember how far we’ve come on that journey. Just a few years ago that might have seemed unthinkable. If we can overcome mental health stigma, then we can also address stigma around incontinence or other bladder or bowel conditions.

Remember, your mind and your body both need care – and professional help from a counsellor or therapist can have physical benefits as well – the link between the gut and the brain is more than just psychological.

Is a bladder or bowel condition a disability?

The Equality Act 2010 “prohibits discrimination against people with the protected characteristics that are specified in section 4 of the Act”.

According to the Act, a person has a disability if they have a physical or mental impairment, and that impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities.

This means that the impairment affects your ability to carry out routine daily tasks such as washing, eating, or moving about. The impairment is considered more than minor or trivial, and the effects have lasted (or are likely to last) at least 12 months for it to be classed as a disability. We discuss this in more detail in our article about Incontinence and Discrimination.

If your impairment is recurring or fluctuating there are special conditions – this applies to conditions such as depression, chronic fatigue syndrome or Myalgic Encephalopathy (ME), which can all coexist with bladder or bowel disorders. 

According to Disability Rights UK, around 15% of the UK population live with a disability. If you would like to find out more about their work, visit their website. It’s important to note that whether you have a disability under the Equalities Act 2010 would need to be decided on an individual basis, however, many of the symptoms experienced by people living with a bladder or bowel condition and the impact on daily life would be considered to be included.

Many disabled people have rights under the Act. Continence problems are a disability, just as a major mobility problem is, even if you don’t consider yourself to be ‘disabled’.

What can we do to address Stigma around incontinence?

The more we speak up about our health in a matter-of-fact way, the more we can empower ourselves to seek the help we need, and live a more fulfilled life. Feeling less of a person because of your health (physical or mental) can have detrimental effects on your mind and body.

At Bladder & Bowel Community we aim to support you to advocate for yourself, which means helping you find like-minded people, health advice, and information. These all provide you with the tools you need to be informed and in control of your decisions.

Most importantly, you need to know you’re not alone.

It may help to join our closed Facebook group  to enable you to chat with other people that have a similar condition. We have over 20,000 community members that have joined the group and help support one another and provide practical information about their journey. 

Join the Support Group here.

What do you think?

Do you keep details of your health private, or practice openness? An NHS Service in North Tees and Hartlepool changes its name from ‘continence service’ to ‘specialist pelvic health team’ in a bid to remove the stigma for some patients. We asked the Community Support Group, and the answers were mixed…

‘I agree a new name would certainly help remove the stigma and embarrassment but not sure this is the one!’

‘It’s a definite improvement but what is really needed are more resources, better availability and quality of products, a better informed and more compassionate GP service.’

‘This could cause confusion as pelvic health is often associated specifically with women’s health.’

As always, we welcome your thoughts and comments – at Bladder & Bowel Community we’re dedicated to supporting your healthcare journey, whatever route that takes. If you have an experience you’d like to share, please email us at [email protected].

Further Information

We support millions of people who live with a bladder or bowel condition, or support someone who does. WIth your help, the stigma around bladder incontinence or bowel problems can be reduced over time, through honesty and openness, and a willingness to be human. Inspirational advocates who have fought stigma include Deborah James (BowelBabe) who tirelessly fought for better diagnosis for bowel cancer, and Nicky Newman (Nicknacklou) who campaigned for breast cancer awareness.

Nicknacklou was described by the BBC as an influencer who showed enormous positivity and who sadly passed away. Her message remains clear – to tell it how it is:

“Her posts showed that although you cannot control the condition, you can control how you deal with it”

We hope we can all learn to address stigma better, by standing up for those who are in need of support, and pulling together when a greater voice is called for. If you’re not ready to speak openly about your health, that’s ok too. In time, we hope that concept becomes a little less daunting, and the world can become more compassionate.