Illness and disability can change how we see our bodies in so many ways! We’ve loved seeing model Winnie Harlow celebrating how her skin, like her mind, continues to change over the years.
For Body Positivity Month this February, let’s join her in loving our bodies for all the things they do for us, and accepting the changes that come.
When most people talk about body positivity, they think about weight gain and fat shaming. Those of us with chronic illness and disability are no strangers to weight fluctuations. Medications can cause our metabolisms to go caddywompus. Challenges with exercise or dietary restrictions can take away any control we may have had, making comments to “just exercise more” or “watch what you eat” all the more infuriating. Looking in the mirror and realizing you look wildly different than you did before your health took a turn brings a whole slew of emotions. And when we lose weight from being sick, feedback from peers about how “healthy” we look now make it difficult to have a positive outlook when feeling better comes with subsequent weight gain.
A chapter in Surviving and Thriving With an Invisible Chronic Illness by Ilana Jacqueline brought me some relief. She suggests keeping a set of clothes for each body type you encounter in yourself. That way, each time your body changes, you have something to wear that looks good and, more importantly, feels like you.
Medical research is beginning to explore the negative effects of weight bias and fat shaming in health care. Movements like body positivity can help reverse the messages that have been instilled in us for generations. We can contribute by using positive talk with ourselves and limiting “body talk” around others.
The emotional toll of illness can leave scars deeper than skin, but even physical scars can be challenging to accept. They are visual reminders of what has happened to us, sometimes traumatic or deeply stigmatized experiences. With the right mindset, however, they can come to represent all of the ways we’ve been stronger than our experiences, the ways we’ve overcome the impossible!
Khaled — Friend in the Fight, and partner to Mighty Well’s Operations Director, Pamela — chatted with us about coming to accept, and even love, his hydrocephalus scars:
“I was diagnosed at 18 months old after my parents observed me having slurred speech and delayed motor skills and took me to a neurologist who determined I had hydrocephalus. I had four surgeries.
As a child I made sure to keep my scars hidden. I never had my hair cut very short and wore hats often. I was ashamed of my scars because I didn’t know the story behind them. My parents, in an effort to protect me, never really divulged exactly why I needed the operations except to say that it was to help with my headaches.
It wasn’t until very recently that I started allowing my hair to be cut very short. My wife taught me to not be afraid. She showed me what it meant to have courage. Having witnessed her own recent struggles with challenges brought on by her illness I too learned to not feel ashamed or embarrassed. Scars are not a sign of vulnerability. They tell people what you might have been once but not who you will be.”
What our bodies are capable of plays a role in how we see ourselves as well. It is important to remember what we can do, and the incredible strength required to overcome the challenges we face, rather than focusing on what our bodies can’t do. Negative self-talk that paints our bodies as the enemy, or phrases like “my body hates me” tend to bring even more pain. A hypnotherapist once suggested that I try picturing my body as a lovable animal or a young child. It may not always behave the way I want, but I would never hate a puppy for acting like a puppy, or hate a child for not being grown up enough to know how to act. She helped me visualize petting the animal or snuggling the child to comfort them. It helped me see my body as a partner in all of this, and that the things it cannot do right now are ok — it’s doing the best it can, given the hand it was dealt.
Our Friend in the Fight Julie has had a tough couple of years. She was diagnosed with EDS and POTS, began using a wheelchair (facing stigma and skepticism as a result), underwent hip surgery during a pandemic, and then discovered new comorbidities that required a PICC line and feeding tube. She has faced each of these new devices with hope — these can help my body to do things it can’t do on its own right now. It took time to get to this place, however, and proudly accepting herself as disabled was not easy. She had to shift from seeing her mobility aids as a reminder of all her body can’t do, to being the tools that make those things possible again:
“Needing mobility aids like crutches, a cane, a walker, or a wheelchair can feel so defeating at first. The more I connected with other people like me, the more I realized that my mobility aids do not limit me, but rather give me freedom to be independent!”
In addition to mobility aids, medical devices like PICCs, ports, pumps, and feeding tubes can impact how we see our bodies. Yet, they are so important for our bodies’ healing!
Mighty Well Ambassador Kiera uses social media to remind others to normalize devices, and to find humor and joy in their scars.
After a third (and somewhat messy) feeding tube placement:
“3 belly buttons are far superior to 2!”
“Those carefree summer days. Just wanted to say let’s normalize being different and needing assistive devices. They aren’t shameful so why should I hide them? Myself and a lot of people I know regularly get comments about covering up our lines, tubes, scars, braces etc. These devices keep me alive and I think that’s badass. So if you are uncomfortable because of someone else’s differences, think about why it makes you uncomfortable and what you can do to change your own perspective on disability before you tell someone to be ashamed of their differences. Happy summer! “
And hey, these devices were the reason Mighty Well was created in the first place! These miracles of modern medicine make us stronger. They don’t dictate our style or confidence unless we let them!
Whatever your body’s journey has been, whatever visible reminders linger on your skin, don’t forget to love yourself for who you are today!