The Importance of Patient Values (Or how TLC should make a show about what to wear to hide a catheter)

I think I was pretty okay with getting the urethral diverticulum diagnosis. I was able to take most things in stride – the abdominal pain is annoying, but not debilitating. Constantly having to pee is something that is frustrating, but can be ignored. Even the increased discharge and funky smell, while definitely not my favorite symptoms, were generally manageable, although it required a little more lead up time before intimacy for me to get myself clean/ change my undergarments/ fix my hair/ apply some eyeliner blah blah blah, all the usual things. Before I start sounding too easy going though, there was something that I was absolutely not okay with – am truthfully still trying to become okay with – The idea that I will have to wear and use a catheter for urination for up to 3 weeks.

The idea that I am going to be unable to control my urination and so I’ll be peeing into and then have to carry a bag of my own pee on my leg is pretty distressing to me. I know, intellectually, that things are going to be okay. Here’s the good news: I spend most of my life sitting in a room with 34 people who are kind, compassionate people training to work in the medical field. I can spend the time I have a catheter sitting/ attempting to minimize discomfort and irritation, surrounded by people who support me and won’t be skeeved out by my bag of pee. I have a very supportive partner who is going to pick up the slack created by my recovery period. I am relatively confident that he will still be attracted to me, although exactly what that looks like is still TBD. I’m also lucky because my mom is going to come down and take care of me the first weekend of my recovery, and that means mom’s home cooking – if that’s not good news I don’t know what is.

So what am I struggling so much with?

A quick anecdote: My mother and I got into a big fight over the family Christmas card this year. I was home for the holidays and she came into my room holding something behind her back. “I don’t think you’re going to like this,” She says. Good start. She pulls out a postcard with an absolutely terrible photo of my sisters and I on it. Over the summer they came to Atlanta for the release of Harry Potter and the Cursed Child (this was a very serious and highly anticipated event). My mom is an impulse shopper, and an avid facebook user. Facebook should probably just go ahead and cut her a check for all of the ad clicks and purchases she has made through their site. During one such “shopping trip” she purchased these shirts that she thought were amazing. They said, “I’m the oldest child, I make the rules.” “I’m the middle child, I’m the reason we have rules.” “I’m the youngest child, the rules don’t apply to me.” hilarious. The shirts didn’t receive quite the enthusiastic response I think she was expecting, but we put the shirts on after a long walk in the Atlanta humidity, walked onto the patio, and took a placating picture. This was the picture that was on the Christmas Card.

Long story short, my mother wasn’t wrong about my reaction, but she was wrong about the reason for my reaction. She thought I was angry because it was an unflattering picture. In a world of social media, photoshop, and instagram filters, it’s not a bad assumption – people regularly de-tag meaningful pictures because they can’t look at the picture and see beyond their double chin, lack of thigh gap, or flabby arm. The offending thing about this picture wasn’t that I had those things (although I largely did), but that I didn’t look like myself. I didn’t look like myself because by and large, I am the type of person who doesn’t leave the house without my hair done. I wear dresses to school in a program where sweatpants would be completely acceptable. I’ve gotten dressed up for every group presentation and exam I’ve pretty much ever taken. My worst days are demarcated by my brightest shades of lipstick. In a life that is crazy and unpredictable, I find a lot of comfort and confidence in looking like I have my sh*t together. Basically, I don’t mind pictures of my double chin, thick thighs, or arm flapping in the wind nearly as much if I’m wearing a cute outfit and matching lipstick.

I think part of my obsession about the catheter part of my future is the inevitability of an external reminder of an internal problem. I recognize that my body’s unusual behavior (discharge, urinary frequency, diverticulum formation) are not a character flaw, but if I’m being honest, it sometimes feels like a personal short coming that everyone will be able to see. I’m pretty sure my first google search after my diagnosis was “What to wear to hide a catheter”. I didn’t find a lot of guidance, and for some weird reason, TLC doesn’t make a show about this. The pages I did find fell into 2 general categories: men wearing catheters after prostatectomy, and women wearing catheters after hysterectomy. The suggestions ranged from wearing tear-off athletic pants to carrying the night bag (bigger than the leg bag) around in a shopping bag with you. None of these suggestions provided me any comfort or made me feel less alone.

I’m still 3 weeks out from surgery, but I’m finally starting to feel a little bit better about the catheter conundrum. I have ordered some clothes online that I think will hide a leg bag better than my skinny jeans and sundresses ever could – more details on that to come. I realize that being concerned about my external appearance on the cusp of having surgery on one of the most vulnerable parts of my body could be perceived as shallow or vapid, which is precisely why I wrote about it. In my worst moments sometimes I think it’s shallow and vapid. But from a patient care standpoint, it’s part of my values as a patient, and in spite of its seemingly superficial nature, I know that wearing sweatpants for three weeks would have an impact on my quality of life as well as my perception of my pathology and recovery. It’s a lesson I’m filing away for my future medical practitioner self – in a realm where we learn a lot about how to create goals for patients, I need to spend time and attention on listening to the goals my (future) patients create for themselves. Because even if the treatment is technically a success and the practitioner is happy, the patient’s (my) perception of the treatment is ultimately the deciding factor on whether or not the treatment was successful, and that can be impacted by so much more than the results of an objective outcome measure. With so much still to come in terms of treatment and outcomes, I know I still have more worrying to do. First things first though – what color lipstick do you think matches a  catheter?