Facing My Body Dysmorphia
Prior to my diagnosis, I had experienced a gradual loss of about 35 pounds over a year. Being 5'1", that was a pretty drastic change to my body.
We did learn later this was a symptom of my cancer, but it happened so slowly that I really didn't notice until the day some of my clothes no longer fit.
Losing more weight and muscle mass
Fast forward to my diagnosis and surgery. On the day of my surgery, I weighed right at 145 pounds. In the month following my surgery, I lost another 20 pounds.
I struggled with malnutrition, difficult recovery, and 3 hospital readmissions. Sitting at 120 pounds, I was incredibly tiny. I had lost around 80 percent of my muscle mass. You could count my ribs from across the room. My eyes were sunken into my face. I looked and felt dreadful.
Coping with hair loss
There were bald spots, and my once thick red curls were gone in a matter of weeks.
The side effects made me unrecognizable
Around 3 months post-op, I couldn't recognize myself in the mirror. Skin and bones with incredibly thin hair. I would actually stare at myself in the mirror trying to see even the smallest pieces of my old self hidden in the reflection.
Bladder cancer and my body dysmorphia
Thankfully, my weight stabilized, and then I actually gained a healthy 10 pounds. My hair stopped falling out and I did a big chop to help blend the new growth with what had held on. But then the weight kept adding up. Now, I find myself having regained all the weight I lost and then some.
Today, I am sitting around 169 pounds - that's a solid 50 pounds in 8 months. When I look at my reflection in the mirror, I don't see myself anymore. I feel like I'm wearing a costume.
The eyes are mine, the voice is mine, but everything else looks so unfamiliar. I have days where I feel like I'm wearing a fat suit. My body doesn't feel like mine anymore.
With all the changes I've gone through, I am for the first time in my life experiencing a struggle with my self-confidence.
Avoiding my reflection in the mirror
Up until now, I've never put much stock into my appearance. I generally liked the way I looked. I was a professional dancer, very athletic, and just happy with where I was physically. Like anyone else, I had days I was super confident with my reflection and days when I wish I had fewer pounds on my frame.
These days, I avoid the mirror at all costs. I'm actually pretty good at it and can go days without analyzing my face. I know this is a type of body dysmorphia. I know I should be so thrilled that I am responding well to my cancer treatment, that I'm fully healed from surgery, and that I'm in a place with my health we couldn't fathom a year ago.
Grieving my losses
But I think it's important to acknowledge the roller coaster I've been on. To experience such a large swing in weight and to watch your hair fall out in the shower is devastating.
For all that I am grateful for, I am also allowed to mourn the loss of who I was. I am allowed to be angry with the lack of control I've felt over the last few months. I am also allowed to give myself grace.
Working on my physical and mental health
These days, I am trying with all my might to be patient, to lean on my medical team and their advice.
We are working through a nutrition plan to balance my new metabolism and help me get to a healthier weight. I have a fabulous palliative team that talks through my mental struggles with me when I feel like everything is overwhelming.
I am also making a point to just talk about this aspect of cancer life. Cancer patients go through so much, and our bodies change drastically month to month or even day-to-day.
The mental gymnastics of everything involved with cancer is exhausting. Adding in a disconnect with your body is just another level of hardship.
Talking about body image after cancer
I try to be vocal about this so that other patients know that it is OK to be frustrated with what cancer does to your body. Weight changes, hair loss, scars, medical appliances, it all takes a toll.
Find someone to talk to about it. Whether it is someone on your medical team, your caregiver, significant other, or close friend - talk about it! There are also fantastic resources if you are like me and want to lose weight in a healthy manner (or gain weight!).
Although I do not fully connect with the woman I see in the mirror today. I do try to remind myself that she is still standing. And that is something to be happy about.
Do you ever find yourself struggling with your body image? Read Shirley's perspective, here.
How well does your healthcare provider understand your bladder cancer?