Paul Hackett is the founder of Bladder Failure UK and Visiting Professor of Health Research Methods at the University of Suffolk. He lives with non-neurogenic bladder failure, managed through regular clean intermittent self-catheterisation.
Here he sets out why he feels the words we use don’t fully support our intended health outcomes, and aims to reframe our bladder and bowel terminology.
We’d like to thank Paul for presenting his symptoms and his case, in order to effect meaningful change.
I self-catheterise six times a day, have done this for a few years and expect to do it for the rest of my life. It is simply how my bladder now works, or rather, how I now work my bladder, since it has stopped working on its own.
For over two years, I have had non-neurogenic bladder failure. I have thought about this the way most people think about their condition, as something to be treated, managed quietly and kept out of view wherever possible. I now think this way of thinking has done me, and people like me, a disservice. Bladder failure is not simply an illness. It is a disability. That distinction is not a semantic nicety. It changes how you and the people around you think and act towards you and what you are entitled to ask for.
Why the illness framing falls short
When I think about an illness, I think of something that happens to your body and, ideally, gets treated: This is something from which you recover, or is at least contained until your life resumes as it was before. That model works reasonably well for an infection or a broken bone, but poorly for a condition that permanently restricts what you can do, where you can go and how you can plan your day, for the rest of your life.
However, if you think of bladder failure as being an illness, this encourages exactly the wrong response as it leads to you attempting to manage it privately, to explain it as little as possible and to try not to let it become anyone else’s problem.
Bladder conditions carry a social taboo that heart or kidney conditions do not and discretion feels like the safer, more dignified option. However, there is a cost to discretion, which means the restrictions the condition places on your life go unacknowledged, by employers, by family, by institutions and sometimes by clinicians. And unacknowledged restrictions do not get accommodated but are silently absorbed by the person living with them.
What disability actually names
In this article, I claim that the term disability, properly understood, is not primarily about what is wrong with a body. It is about the gap between what a person needs in order to function and what is provided in their environment. A person who uses a wheelchair is not disabled by their legs alone, they are disabled by stairs, by narrow doorways, by a world built without them in mind. The same logic applies with bladder failure.
The fact that I have bladder failure means that I need reliable, private access to a toilet roughly every three hours and always have to keep to this schedule for the rest of my life. It also means that unpredictable social and professional situations, such as long meetings, delayed trains or planes or events with no facilities nearby, are not minor inconveniences but may have very serious impacts. Needing clean and private toilet access restricts where I can go, what work I can do and takes time to plan.
These are not illness symptoms, they constitute a disability, in the fullest sense of the word: a mismatch between what my body requires and the provisions available. Once seen in this way, the case for openness rather than concealment becomes obvious. Nobody expects a wheelchair user to hide their wheelchair so as not to inconvenience others. And ramps are provided. The equivalent standard should apply here, not concealment of bladder failure, but acknowledgement of the restriction and accommodation to match.
Why the words we use matter
I believe that part of what keeps bladder failure trapped within thinking that sees the condition as an illness, is the language clinicians and patients use to describe it. For instance, as underactive bladder, or as a voiding dysfunction. Both terms are technically defensible, and neither is wrong, but both misdescribe what is actually happening and that misdescription is significant.
An underactive bladder sounds like a bladder that is not trying hard enough, but with sufficient encouragement it might do better. That is not what has happened to mine. My bladder has not given up trying. It has lost its ability to succeed. The muscle itself can no longer generate the contractile force needed to empty properly regardless of effort. Calling that underactivity feels like calling heart failure underactive pumping. Technically there is a reduction in function, but underactivity deminishes the permanence and seriousness of what has gone wrong.
We do not talk this way about other organs that stop doing their job. When the heart can no longer pump effectively, we call it heart failure. When the kidneys can no longer filter effectively, we call it renal failure. When the lungs can no longer oxygenate effectively, we call it respiratory failure. In each case the name describes the consequence, an organ that fails to meet the body’s needs, rather than trying to describe the underlying mechanism in miniature. Those names are taken seriously, are recognised and are discussed openly. Moreover, these conditions attract funding, awareness campaigns and public sympathy that bladder conditions rarely receive.
I am proposing that bladder failure deserves the same treatment as other disabilities.
When a bladder can no longer empty adequately, whatever the precise mechanism, the honest and consequential description is failure, not underactivity, not dysfunction and not the various other softened terms used in clinical practice. Naming the condition accurately is not a cosmetic change but part of the same argument I am making about disability rather than illness. Soft, mechanism-focused language keeps a condition sounding minor, manageable and essentially private.
Blunt, consequence-focused language, the kind we already use for heart, kidney, and lung failure, makes clear that something serious and permanent has happened and that it deserves to be acknowledged as such by the people around the person living with it.
I recognise that clinicians reach for precise urodynamic terminology for good clinical reasons, and I am not suggesting that diagnostic accuracy should be abandoned. But there is room for both, a precise clinical description for the notes, and a plain, honest name for everyday use, in conversation with patients, with employers and with the wider public. Patients carry the words they are given at diagnosis for the rest of their lives. Those words shape how they understand their own bodies and how they explain themselves to everyone else. Getting the name right is entirely within the profession’s control and it is worth getting right.
I have watched it happen in myself
The claims I have made above, and my calls for a change in the language used, are not abstract points of style. Rather, I make these points because I have watched it happen in myself. In the early months after diagnosis, when I still thought of my condition as underactivity, I found myself quietly apologising for it, as though a little more effort or a little more discipline on my part might make things better. That is precisely the wrong lesson for a patient to draw, and it is the lesson the language was quietly teaching me. Once I began thinking and speaking of it as failure, the apologetic instinct receded. The condition had not changed, the story I was telling myself about it had.
The multiple names are disorientating for patients
A review of the terminology that is used at present reveals rather a mess. For example, detrusor underactivity, underactive bladder, non-obstructive urinary retention, chronic urinary retention, and several other overlapping labels are used across different specialisms and different countries. These terms often describe the same clinical picture with different words, and occasionally the same word with different meanings.
The existence of inconsistencies in the names used to define the condition is not just clumsy or inconvenient for a researcher who is trying to compare studies. The multiple names are disorientating for patients, who may be given two or three different names for the same condition across their appointments with health professionals, with no clear sense of whether these are the same thing described differently or genuinely different problems. A single, honest, consequence-focused name would help clinicians as much as it would help patients.
What acknowledgement actually changes
For the person who lives with bladder failure, being recognised as having a disability rather than an illness changes the way that they think about themselves. It changes how they ask questions about themselves from how do I manage this without anyone noticing to what do I need in order to participate fully, and who can help provide this. That is not a small shift but the difference between a life organised around concealment and a life organised around participation. For employers, it changes what is reasonable to expect and what is reasonable to provide.
An employer who understands bladder failure as a disability, rather than a private medical inconvenience, is in a position to build in the flexibility that actually helps, unrestricted toilet access, the ability to leave meetings without explanation, realistic expectations around travel, etc. What is required is acknowledgement of real and structural restrictions, in the same way a mobility restriction would be.
In a similar fashion to how standardising the term bladder failure may alter how a person thinks about themselves, for family members, friends and colleagues, it may also change the questions that they ask. Instead of wondering whether something is wrong, or waiting for an explanation that may never come, they can ask what would actually help, in the same way they might ask a person with a mobility impairment what access they need.
Finally, when we address clinicians and policymakers, the change to a consistently used disability label changes the services that may be provided. If a condition is seen as an illness it receives a treatment pathway, but a disability receives accommodations, planning, and a form of recognition that acknowledges that support is not an indulgence but basic provision. For example, a ramp, a hearing loop or a disabled parking space is treated as basic provision rather than a special favour. A service that treats bladder failure as a disability is more likely to invest in peer support, specialist nursing follow-up and the kind of ongoing contact that other chronic conditions take for granted, and that bladder failure very often does not receive.
What I am asking for
So far in this short essay I have set out the issues that I believe need to be addressed. I now turn to suggest what needs to be done. First, I want to say that I am not asking anyone to make a fuss of me or others with bladder failure. What I am asking for are the same thing disability advocates have long asked for with other conditions: that the bladder failure and its restrictions are honestly named rather than carried quietly by the person with the disability. Bladder failure limits what I can do and I believe that these limitations deserve to be acknowledged as a disability, with that acknowledgement being accompanied with understanding rather than assumption, accommodation rather than concealment and support built around the restriction rather than left to be improvised alone, every three hours, for the rest of the person’s life.
The first step is to address what we call the condition. If the word underactivity keeps this condition sounding minor and privately manageable, then changing the word is not a trivial act of rebranding. It is the first, smallest accommodation, and one that costs nothing to make.
If you are a reader who manages bladder failure, I would like to conclude by asking you to consider naming your condition as bladder failure. Instead of thinking of your condition as something that you have to quietly manage out of sight, but as a disability that places real restrictions on your life. These are restrictions that other people and the institutions you deal with and have a responsibility to understand and accommodate. That is not a request for special treatment. It is simply what should follow whenever the needs that a person has, and the way in which the world is arranged, fail to match.
We’d like to thank Paul for setting out his thoughts, and we hope this is helpful when you next need to visit your GP or clinician. Framing our healthcare needs in our own minds can be vital for accessing the right care.
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