Talking Taboo: My Dirty Disability Secret

Content note: This article discusses assault, bowel and bladder incontinence, depression and suicidal thoughts.

After nerve damage left Amanda Smith living with bowel and bladder incontinence, ordinary trips outside the house became an exercise in planning, secrecy and fear. Here she writes about stigma, medical dismissal and the treatment that gave her room to live again.

In 2015 I was assaulted. My coccyx was broken and the nerves attached were damaged. My life immediately turned upside down; I also sustained damage to my neck, which caused severe pain and an overwhelming feeling that I was quite literally broken beyond repair.

I had always taken continence for granted. I had pigeonholed people without control over their bladder or bowels as elderly, immobile or infirm. I simply hadn’t considered it for myself. Then it happened to me. I went from being a busy, hardworking single parent to a person living with severe restrictions and the need for constant self-imposed control.

I have led a very rich life full of wonderful experiences, so don’t feel sorry for me. In fact, mine is a story with a happy ending. Even though we are going to talk about poo, I would encourage you to read on.

“Disability is not fundamentally a question of medicine or health, nor is it just an issue of sensitivity and compassion; rather, it is a question of politics and power(lessness), power over, and power to.”

Dianne Pothier and Richard Devlin, Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law (2006), as quoted in later disability-studies scholarship.

Keeping the secret

Power is an advantage. Most people at least expect to have control over their bodies. I could present myself to society as a balanced, healthy individual until my disability raised its head and my secret was out.

I concentrated very hard on not letting the world see what I dealt with every day. I would go to the ends of the earth and expend an extraordinary amount of energy just to ensure members of the public were not exposed to my disability.

I’ve often seen notices outside disabled toilets reminding people that not all disabilities are visible. Is that believed? Do people assume someone is on some kind of benefit scam? Or is that just my paranoia?

I had every bowel and bladder examination and test going, for which I am eternally grateful. The NHS is a marvellous privilege. Often, though, I was left alone in a silent room to perform, which nurtured a sense of isolation and disability and sometimes brought me to silent tears. The tests went on for years. During bladder tests, I was repeatedly told the results were not viable because I had a urine infection. Back to the antibiotics.

In my experience, bowel incontinence was something I had to find the guts to mention. Urinary incontinence seemed easier to talk about. But who talks about losing control of their shit? For me, a world of secrecy grew around the condition.

Not too long ago I was a total recluse. I rarely left home and ordered my shopping to be delivered rather than risk my dignity in a supermarket. I felt my life was over. I couldn’t imagine how I would continue living with bowel incontinence, a 24-hour, seven-day-a-week challenge that even appeared in my dreams.

I was always treated with great compassion by medical staff, but I was sorry there wasn’t more advice about managing the wider effect on my life. I felt helpless. Care often seemed focused on containing poo, while the psychological impact, social consequences and quality-of-life issues felt secondary.

Incontinence had become part of my identity, and I saw that identity as broken. I felt taboo, as if I had crossed one of society’s most basic rules.

“Three dispositions adverse to Heav’n’s will, Incontinence, malice, and mad brutishness.”

Dante Alighieri, Inferno, Canto XI, Henry Francis Cary translation. In this passage, “incontinence” means a lack of self-restraint, not bowel or bladder incontinence. The shared word still landed painfully for me.

It took a lot of courage for me to admit that I had no control. Every time I told a family member or friend it felt like a confession of guilt. Sometimes I was met with silence because the person simply didn’t know what to say. At other times I felt their revulsion, and it reinforced how outside ordinary social life I had come to feel.

When a doctor took away my hope

While doctors were investigating the cause of my problems, I was sent to a neurologist who assessed me by asking me to walk around and then lift my arms. He concluded with a patronising smile that “sometimes we just have to live with our conditions”.

His name is imprinted on my brain as one of the few people in my life who have made a significant impact without knowing it. On the way home I seriously considered driving to a local suicide spot and throwing myself off a cliff. I felt helpless. By telling me there was no solution, he reinforced that helplessness and stripped away my hope.

Many family members, thankfully, were extremely sympathetic and supportive. They understood the severe anxiety that came with leaving the house and the depression that could settle over me when I returned.

After one sad family passing, I drove about five hours because I simply had to be there. I was fortunate to have a small campervan, so I stopped several times to use a bucket toilet I had knocked up in the back.

Every outing had to be planned around available toilets. I carried pads, something to clean myself with and a change of clothes. Nurses sometimes suggested the adult nappies available on the NHS, but I couldn’t deal with them; for me, they felt demeaning and degrading. It also bothered me to add so much to landfill.

Instead, I catheterised twice daily and used a bowel irrigation system, which gave me a window of activity as long as I didn’t eat or drink. The washing machine was on every day. I usually stopped eating and drinking around seven o’clock to moderate the many night-time disturbances. During the day I simply tried to reach the toilet in time and wore large pads.

The time bomb of uncertainty

It’s the uncertainty that makes the omnipresent risk of an episode of incontinence so disabling. It feels like a time bomb ready to explode. The vigilance required by that unpredictability is there every waking minute and even follows me into sleep. The burden of it, punctuated by periods of despair, is exhausting.

Life revolves around being near a bathroom and avoiding the biggest fear: being incontinent in public.

It happened once in a supermarket. The humiliation, shame, disgrace and anger were overwhelming. I struggled to control my emotions, breathing heavily, panicked and desperate. With my eyes firmly fixed on the floor, I made a dash for the bathroom. I only shopped in places that had public toilets.

I cleaned myself up and changed into the spare leggings I always carried. Coming out was nerve-racking because I didn’t know who had seen what or who had understood what had happened. Sometimes I would return to my shopping and try to look as if nothing had happened. Mostly, I would leave and go straight home.

The trouble was that episodes were so erratic that even after I had composed myself, I was terrified it would happen again.

A treatment that changed my daily life

I often look back at that period and wonder how I managed. For much of the time I felt my life was over. I became a recluse and might even say I went a little mad.

For me, there was eventually a treatment that helped. There had been talk for some time of a stoma, something I was dreading. Then one day I received an appointment with a new consultant who offered a different form of treatment.

As soon as it was described to me, I instinctively felt hopeful. I was put on a waiting list for a nerve stimulator, a small electronic implant connected to nerves by wires, a little like a pacemaker in principle. I had a trial first, and there was a huge difference in my control.

I waited another year for the implant. Eventually it was inserted under the skin in my lower back. I am eternally grateful for the technology and for the consultant who understood what I was living with. Where the neurologist had dismissed my health problems and added to my despair, here was someone offering a possible way forward.

A year has passed since I received my implant, almost like a new birthday. It has taken some getting used to, but I now have enough control to cope and hours of freedom at a time.

What did I do with that newfound life? I enrolled in a university degree.

Ironically, my writing improved during my years of isolation, and I leaned on it to help me through my darkest hours. Now I use it every day on my creative writing course. It might be a little unusual at my age, but I am so filled with a youthful sense of freedom that it feels absolutely right.

I feel grateful to the NHS, to my friends and family, and to the rare strangers whose compassion stayed with me. I know my treatment outcome is my own experience, not everyone’s. What I can carry forward is a determination to question the assumptions I once held about disability, including the ones I didn’t know I had.