Talking Away Taboo

Breast and balls. We feel comfortable talking about cancers that attack those body parts. Charities have done an amazing job of removing social taboos and making conversations about awareness, self-checks and treatments for breast, prostate and testicular cancer easier. Posters and campaign ads can be found everywhere, from doctor’s offices to club bathrooms. But bladder cancer remains taboo. Why is bladder cancer treated so differently?

Bladder cancer affects parts of the body and bodily functions that are usually kept private. This social taboo of keeping our privates private impacts bladder cancer patients, their families, friends and caregivers, resulting in misconceptions, taboo, and sometimes even shame. None of this is helpful to the patient or those around them.

Taboos make sharing hard

My mother received her stage 3 bladder cancer diagnosis a few years ago. What I learned from her cancer journey is that the taboo around bladders, radical cystectomy (RC), bags, sexual health, and everything else that comes along with this disease, is not helpful.

More importantly, the taboo around these things can make it harder for patients to really share their experiences – what they are going through and living with. If patients can't really share their experiences, how can we, as friends, family or caregivers, really offer support?

Overcoming prudish attitudes

I never imagined I would speak so much about my mother’s private parts as I have since her diagnosis. But even as I write this, I am still battling with the taboo. Why am I saying “private parts” instead of the medically accurate words? Maybe it's because I’m British and we’re renowned for being slightly prudish. Maybe it's because I don't want you to read this and feel uncomfortable. But that’s the point.

We, as a society, need to get over how we talk about this disease and the parts of the body it affects. The taboo needs to be removed. If we don't remove it, patients can never be truly honest about what they are feeling, living with, and experiencing.

Let’s get comfortable with bladder cancer

The changes that come from radical surgeries for bladder cancer can have a lasting impact for patients, their partners and their sex lives. My parents have been married for 40 years and they are still like two teenagers in love. As a child or teenager, this was sometimes embarrassing. I never wanted to think about my parents and sex. I think this is normal for most young adolescents. But, like most people, I gained an understanding of what a healthy adult relationship is as I grew older.

The surgeries my mother had to remove her bladder cancer had life changing effects. In fact, the effects were never even discussed with her before treatment and the reality came as a rather unwelcome shock. If health professionals give into the taboo and avoid talking about the effects, how hard must it be for patients to be honest with those around them?

More talk, less taboo

Luckily, we, as a family, have always been able to talk openly and honestly with each other, even though my older brother is rather more prudish than me. Learning about the lasting effects of my mother’s surgery was sometimes uncomfortable, but necessary. Talking about bladder cancer was the easy part. Talking about the effects of treatment was where taboo raised its ugly head.

What I learned is that being able to talk about the things that sometimes make me uncomfortable was necessary to offer my mother support. She was going through something so difficult. Why should I let the taboo of a certain topic prevent me offering the best support? Talking away the taboos around this disease is something I personally believe needs to be done more. Without a true understanding of the real effects of this disease, I can’t really offer support or comfort.

So, caregivers, family members and friends of bladder cancer patients, please, let’s talk away the taboo. Our loved ones are already dealing with so much. We shouldn’t add societal shame to their list of things to deal with.