“I want to raise awareness about incontinence, open the dialogue and encourage people to feel comfortable talking about it,” says Caitlyn Davey, a journalist who lives with a neurogenic bladder. Caitlyn’s condition means she does not have control over her bladder and needs to self-catheterise, emptying her bladder with a catheter at regular times during the day, for the rest of her life.
“I’m 34 years old and I feel very alone as a young person on this journey,” says Caitlyn. “I want to reach out to others because living with a chronic health condition can be isolating and scary, particularly if you don’t have people to ask questions of or confide in. I thought I’d lead by example, by sharing my story in Bridge Magazine.”
Caitlyn’s journey began when a pandemic changed the world. She had been living and working as a journalist in Dubai for eight years but lost her job when COVID-19 hit, along with her visa and healthcare cover. Around the same time, she started to feel unwell. Health insurance is privatised in the United Arab Emirates (UAE) and expensive. Once Caitlyn lost her job, she had no cover and would have to cover any medical expenses herself.
Locked into a 12-month real estate lease, and with Australia rapidly closing its borders, Caitlyn thought she would be able to just wait out the COVID-19 wave and start wrapping up her life in Dubai. However, like so many of us at the beginning of the pandemic, Caitlyn had no idea just how long this would take. She was also becoming increasingly unwell, losing 14 kg over a few months as she was unable to eat and waking at night with abdominal pains, sweating and dizziness.
Looking back on the time when she first started experiencing symptoms, Caitlyn says what she thought had been a few months turned out to be a whole year. She describes a steady decline in her health over this time, with a significant drop in energy levels, but says she just adapted to functioning at a lower level. Before she lost her job, she had sought medical help, reporting she was exhausted and had stomach cramps and no energy. This was unusual for Caitlyn, who had always been very active, doing cross fit most mornings and playing basketball after work at night, but she found it all had to stop. “I said this is not like me, I’m used to being busy and active, but now I’m doing less and less and finding myself more and more exhausted.”
At the time, the doctor thought perhaps Caitlyn’s symptoms were due to her being vegetarian, possibly low in iron or anaemic, or her body was fighting a virus. Caitlyn says she went back to the doctor three times, once feeling very dizzy and concerned she might faint, but was diagnosed at the time with anxiety. It turned out to be kidney failure, something Caitlyn wasn’t to discover until she returned to Australia.
By the time she was finally able to get back to Australia, Caitlyn saw a GP who immediately ordered a barrage of tests. Two days later, it was revealed she had kidney failure and needed to be hospitalised. Her glomerular filtration rate (GFR) was 17; in a healthy person the expected GFR level is usually 90 or higher. After being admitted to the renal unit in a public hospital, the renal specialist told her “your kidneys are failing, but we don’t know why and the best thing to do right now is admit you.”
So, less than a week and a half after returning from the UAE, Caitlyn was admitted to hospital. There it was found that her bladder was greatly enlarged, distended and infected. A catheter was put in that night and Caitlyn describes excruciating agony as blood clots and more than three litres of urine were emptied from her bladder overnight.
A week in the renal unit was followed by surgical exploration, a biopsy, an MRI and numerous blood tests. Caitlyn’s case was so unusual and complex, several specialists were involved, including the infectious diseases team who were brought in to rule out a parasitic infection. Finally, after three weeks of being in and out of hospital, a tumour was found on Caitlyn’s spinal cord.
Although the tumour was benign, it was inside the spinal cord and had damaged the nerve endings between her brain and her bladder. “So literally my brain couldn’t tell my bladder it needed to be emptied,” says Caitlyn. An emergency operation was performed to remove the tumour but unfortunately the damage to the nerves had already been done.
“It was a traumatic surgery, but it saved my life,” says Caitlyn, “but it was during COVID-19, so no visitors were allowed and I didn’t have my mum there to hold my hand. I was crying all the time because I was so scared and confused, but the nurses were amazing. They would just sit with me and comfort me. It was just what I really needed at the time. I’ve always appreciated nurses, but I don’t think I’d realised just how much they do for their patients until what I went through.”
Caitlyn does not receive the brain signal to empty her bladder, so after the surgery she had to learn intermittent self-catheterisation, which she was told would be a lifelong process. Other treatment options may be considered in the future, but Caitlyn says for now she is mostly in a situation of ‘damage control.’ Her kidneys are still very much affected and whilst her GFR has increased to 50%, that has taken three years. It also took time for the pressure in her bladder to reduce and she is monitored regularly to ensure the tumour has not returned.
Caitlyn needs to remember to self-catheterise regularly throughout the day. “It can be very stressful, and I need to be really careful using catheters to make sure I don’t get urinary tract or bladder infections and risk any further damage to my kidneys,” she says. “I also still experience debilitating fatigue one to two days per week which can knock me out and force me to just rest.”
Caitlyn finds this all very frightening in retrospect as the lack of accurate diagnosis for her became life-threatening. “If I hadn’t got on the plane back to Australia when I did, I genuinely believe I would have died,” says Caitlyn, “or ended up in a hospital bed in Dubai facing a medical bill in the thousands.” Caitlyn managed to get on the last available flight out of Abu Dabi to Sydney.
Caitlyn had clearly been in a potentially life-threatening situation and needed support to process what she had been through. She says working with a psychologist has been enormously beneficial in helping her to deal with the mental and emotional challenges of her journey. She was diagnosed with post-traumatic stress disorder (PTSD) and later also attention deficit hyperactivity disorder (ADHD) which manifested as agitation and forgetfulness in her. “I have to make sure I take catheters everywhere and I have trouble because I often forget,” she says. “Without catheters, everything grinds to a halt. I have a bag which contains portable catheters but sometimes I forget it and I might be at work and need one immediately, so I have to get someone to put some in a bag and then an uber to get to me as soon as possible.”
Having been caught short before, Caitlyn says she’s getting better at remembering to take her catheter bag with her and always has a backup one in her car now but needs to always be prepared. “I’m so lucky I can go swimming comfortably and do the sport that’s so important to me, but on the flip side of that, if I don’t have a catheter with me, life grinds to a halt. And you can’t just nip into a chemist and get one as they don’t sell them,” she says.
The mental and psychological challenges
Not surprisingly, Caitlyn has been faced with numerous other challenges on her health journey. “People can’t see my condition so they may not necessarily understand that I have a special need to use a disabled toilet,” she says. “I can get very negative and stressed about my situation but then I counter that with thoughts like thank God I got back to Australia and thank God I’m alive and I have this phenomenal medical team assisting me on this journey. I get to do what I love. I get to work, which I love and play sport which I love and chase my nephews, which is my favourite thing to do. As long as I have those things that I’m able to do it helps to keep things in perspective.”
She says she also learned a lot of self-compassion while working with her psychologist. “When I was in the hospital, I had to just live moment by moment and it was very much one day at a time. I couldn’t think about what the future held or even the next week,” says Caitlyn. “I just had to be in the moment and focus on just being able to sit up or get out of bed. And now that helps me when I have to focus on a painful task. I tell myself to just focus on this one minute, and then this one minute and the next and that helps me to get through the steps.”
“For a long time, I didn’t really reflect on what had happened to me until I started speaking to the psychologist and even now sharing my story, I can’t quite believe it!” reflects Caitlyn. “There’s still an element of shock there. It’s not my reality now but it was my reality in 2020 when the world was also in turmoil. In a funny way, COVID-19 sort of saved my life because it got me home and to the support I needed.”
These days, Caitlyn carries her catheters and equipment in a pencil case everywhere. “At the start I worried that people might see me carrying it to the toilet and wonder what it is and think I had my period,” she says, “but you know what, people don’t care and if they do care, why don’t I talk about it? A friend said oh is that your period bag and I said no and shared with her that I have continence issues and I use catheters and that really opened her eyes and she was more compassionate towards me which I really valued.”
“I had felt ashamed at the start, but now I want to talk about it and I want people to know because it is something that impacts my life and it impacts a lot of people’s lives. It took time for me to be okay talking about it but now I really want to open the dialogue and normalise discussion around incontinence. So many people experience it and I want them to feel supported and accepted,” says Caitlyn.
Caitlyn is currently preparing a series for ABC News on the lived experience of incontinence, particularly in young people, to be released during World Continence Week (19 to 25 June). She says she can approach this topic with sensitivity and the insight she has gained from her own lived experience.
“This whole health journey has profoundly changed me as a person and has made me appreciate life so much more,” says Caitlyn. “The purpose of the ABC series is to open conversations, share stories and help normalise the discussion around incontinence, which I think will be valuable. People tend to think it’s only older people or women who’ve had children who need continence aids, but I don’t fall into either of those categories. I particularly want to connect with people around my age who may have incontinence due to other causes and share our stories to enable connection and support.”