The Stigma of Bladder Pain Syndrome
16th November - 16th December 2022 is Disability History Month, and it’s time I used this platform to raise awareness of the stigma that comes with my hidden disability.
If you have read my previous blog, Living with a Chronic Illness - A Hidden Disability, then you will know that I suffer with an auto-immune disease called Bladder Pain Syndrome (formerly known as Interstitial Cystitis).
When discussing disabilities, there are normally two models which are referred to: the medical model and social models of disability. The blending of the two models means that whilst medical model refers to physical and mental health, and treatments to improve quality of life, the social model addresses improvement to environments and attitudes to deliver equivalent experiences for all.
Whilst my condition does not meet the legal requirements of a ‘disability’, the social model is something that aligns with my needs. Though my disability is not visible, it hinders my life on a daily basis (see my old blog) which means that I do not have an equal experience compared to others.
One thing that has caught my attention in recent months is the stigma around this illness. For most of my life, I was ignored by doctors. And now, I am being ignored by society. Bladder function is not exactly a ‘dinner table’ topic. And therefore, bladder conditions can often be awkward and embarrassing to discuss. Such conversations often bring feelings of my condition being minimised as others offer advice such as “have you tried cranberry juice?” (something that can actually induce a flare of symptoms). Bladder Pain Syndrome management is much more complex than a quick fix for a perceived Urinary Tract Infection.
In addition to this, Bladder Pain Syndrome is often minimised as not being that debilitating, painful or serious. In fact, Dr. Nicole Cozean cites that a common myth is that “it is all in your head.” She says “As late as the 1970s (when many doctors today were in school), they were being taught that interstitial cystitis [Bladder Pain Syndrome] was a psychosomatic condition of 'hysterical' women.”
Using the disabled toilet when looking able-bodied can often result in receiving funny looks, which brings shame and stigma. It also makes me feel like I am attention-seeking or that my condition is not serious enough to warrant access to disabled toilet. Sometimes, this has meant that I avoid using a disabled toilet, which has lead to further pain and discomfort. There was one incident at a festival where I was sworn at by one person who said that I “do not look disabled” but they really needed to use the bathroom and so needed to use the toilet before me.
Due to my condition being minimised and invisible, I often suffer in silence. Each day, I battle with pain and discomfort. I have to constantly plan ahead:
When will I have time to visit the toilet?
Are there even toilets nearby?
What will the queue be like for the toilet?
How will this impact my ability to perform my job?
As a lecturer, do I want to draw additional attention to myself by constantly leaving the room?
Do I need to announce to a class full of students that I will need frequent toilet breaks?
Reflecting on my illness as part of Disability History Month, I have decided one thing: I am no longer going to suffer in silence. I am going to use a disabled toilet where I need to. I do not have to explain myself to anyone. And other people should not be making judgements on my body and my needs.
On a final note, I encourage my readers to reflect on the privilege of ableism and to take an active approach in engaging with sensitive conversations around physical (and mental) health. It’s time to reduce the stigma that ebbs at disabled people.
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