March 05, 2021
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Living in a body is a complex experience.
One of the most surreal experiences in my adult life occurred while sitting at my desk at work, listening to a nurse tell me over the phone that my doctors discovered a series of brain and spine lesions during my recent MRI.
How is it that these invisible-to-me lesions could exist? In my mind, this was the type of thing that happened to other people, not me.
Six years later, I still joke that before that day, I never really identified as someone with brain and spine lesions, because of course, none of us do until we receive that call. It just isn’t part of what we tend to imagine for our lives.
Medical diagnoses can feel alienating from our own bodies. In those first days and weeks of my new multiple sclerosis (MS) diagnosis, I felt like a stranger in my own skin.
The period before diagnosis was just as strange, if not more so.
MS first visited me as a significant shift in nerve sensation one morning when I got out of bed.
My left foot felt the cool floor, and my right foot felt warm. A skin-deep numbness crept up my leg to my hip on that first day, lasting for over a week. Eventually, it switched sides to my left leg, spanning even higher to my mid-torso.
The sensation stayed for weeks, and then months. I couldn’t understand why my body was acting so strangely.
If you were to tell me that years into the future I’d look back at the presentation of this new neurological disease as the beginning of a kinder relationship with my body, I’d probably have laughed and raised an eyebrow. And yet, today I can tell you that this is exactly what happened.
How is it that my relationship with my body evolved for the better, even in the midst of the life changing diagnosis of an incurable disease?
The period before I learned I had MS was tricky for me, both physically and psychologically.
In addition to the “weird leg numbness thing,” I experienced a significant shift in my energy levels. The only word I knew to use was “tired,” but looking back, I can see that it was an even deeper type of MS fatigue called “lassitude.”
At the time, I felt tremendous self-doubt about why this “tiredness” kept showing up.
I’d resorted to secretly napping under my desk at work most days, and I couldn’t help but think of the Seinfeld episode when George learned he could sneak luxurious naps at work.
I don’t really identify as a George Costanza type, so this brought up some shame. I’d worked hard to establish a trustworthy and professional relationship with my colleagues at my workplace.
These naps were so far outside of how I saw myself, and yet I needed them.
Was I lazy? Had I stopped caring about my work? Since I had no diagnosis yet, all I knew to do was direct blame inward to who I am as a person.
Even after my diagnosis, the self-doubt lingered. Sometimes it didn’t even matter that I was looking at literal images of the lesions on my brain and spine; something in me doubted the validity of my symptoms.
What if it was just me and my attitude? Maybe I needed to snap out of it and be more positive, energetic, and resilient.
Over time, and with psychotherapy with a clinician I really liked, I started to understand that I’d learned patterns of self-doubt and self-blame from childhood, when so many of us experience shame and fear in the K–12 school system, in our familial relationships, and in a work-first culture as a whole.
Children and women can often be doubted and undermined in the medical world, as well. While we’re here, it’s important to mention that trans folks and women of color experience a whole other level of medical invalidation and mistreatment that I can’t personally relate to, but is certainly very real.
As I discovered these patterns of self-doubt, I began to find new ways of relating to my body and my thinking. Instead of doubting myself, I experimented with believing my symptoms and my body.
My old pattern would have me second-guess my needs, try to just keep going, or blame myself for not measuring up. Now, I was learning to ask for more of what I needed at work in the form of accommodations and time off. I was learning how to ask for support, grace, and flexibility from my friends when I needed it.
No longer having the bandwidth to ignore my body’s needs — as awkward and uncomfortable as it felt at first — was a gift in some ways.
In discovering that I’d been ignoring my body, I opened up a door to positive, responsive communication with it. I learned that it’s completely acceptable if I need to pause, go home, and rest.
Even years into living with MS (and even more years spent “adulting”), I still experience medical anxiety leading up to certain doctor’s appointments.
I can recall the feeling of the seatbelt across my chest on the way to a medication infusion day at the hospital. My stomach turned upside down, and I watched the windshield wipers move back and forth ominously as I approached my destination.
Images of “what could happen” passed through my mind. A desire to be at home and hiding under the blankets washed over me, and I felt sad, angry, and afraid.
As a child, I used to hide in the bathroom at the doctor’s office when it was time for an inoculation, or as my kid self would say, “a shot.” Ouch. The fear was strong back then!
As an adult, I sometimes feel compelled to ignore that same fear and just act like everything is fine. But that’s pretty unnatural, because the truth is, I am still afraid sometimes.
In my training as a psychotherapist, I learned about the power of relating to the inner child that can feel fear the exact way we did as children.
Many of us can default to responding to these fears from our “inner-problem-solver” selves, when what we really need is the compassionate, nurturing part of ourselves to help soothe and validate our childlike fears.
So one day, on a scary drive to the doctor’s office, I decided to turn toward the scary emotions rather than away from them.
It went even better than expected.
When I started to view the fear in myself the same way I’d view it from a beloved child in my life, I realized that I had been acting exactly the opposite of how I would with a little one.
Likely, I’d listen to a scared child, tell her it makes sense she’s afraid, squeeze her hand, and let her know I’d be there with her the whole time.
Instead of telling myself to stop feeling scared, I had an inner conversation between my protective, nurturing self, and my scared, little-kid self.
I told her it was OK to have every last feeling, and that I didn’t blame her for being afraid. I gave her full permission to cry, grit her teeth, cross her arms, and feel generally crummy about everything.
In allowing myself to feel difficult feelings, I opened up my ability to experience care and protection from the nurturing part of myself.
It felt like a form of self-respect.
As I practiced this new way of responding to myself, my appointments began to feel less like me against the medical staff and the world and more like a collaboration between different parts of myself amidst whatever the appointment brought my way.
This new approach helped me increase my emotional range. I felt so proud of myself — sometimes even joyful — after the appointments because I’d let myself feel the hard feelings when they came up.
This is what it means to stay by my side, rather than abandon the fearful parts of myself when they show up.
I once attended a women’s exercise class with an upbeat instructor who attempted to motivate me and my classmates with an approach that just didn’t work for me.
As she taught us a new and challenging move, she suggested that if we worked hard, we’d be rewarded with “pretty” bodies that elicited — and I am not joking — larger and more expensive diamond engagement rings from our suitors. I still chuckle when I think about it.
A few years later, I went to a group exercise class led by another teacher with a different approach. She encouraged us by telling us that if we nailed these exercises, we’d be well-equipped to play certain sports skillfully and with real strength.
I loved this second approach, because it empowered and inspired me to do more with my body based on my own enjoyment, versus the outside-in approach of the first instructor who prioritized others’ views of our bodies.
Growing up as a girl, and now moving through the world as a woman, I’ve learned subtle and overt ways I’m “supposed” to think of my body. While that could be its own article, I can sum up all of these unhelpful social messages in one phrase: “Worry about how others see your body.”
I’ll always be a supporter of women enjoying and celebrating our bodies’ external appearances, and yet it took me a while to find my own understanding of how that could feel liberating rather than oppressive to my spirit.
Living with a newly diagnosed health condition really helped me press fast-forward with this whole concept. Ableism and sexism can join forces to create a critical inner voice that sounds a lot like that first exercise instructor.
When I ask myself if others will see me as desirable, even with MS, I find it empowering to notice how much that question focuses on the perspective of who I am from someone else’s point of view, or an “outside-in” values system.
This goes right along with that cultural messaging that we are supposed to determine our worth based on how others see us physically.
In reclaiming my relationship with my body while living with MS, I’ve started to define it from the inside-out.
My body is for me and for my engagement with the world. It’s for hugging my friends and family, watching sunrises, playing on the floor with the children in my life, enjoying food, taking hot baths, and whatever else is important to me.
When I see my body as a vessel that allows me to do what I love, who I am feels infinite and boundless, as powerful and stunning as all the stars in the sky.
From this place, how could I see myself as anything less than worthy?
Living with physical limitations means being creative when I don’t have the abilities to do exactly what I want, like enjoying the aliveness of a plant or bouquet of flowers when my body isn’t up for a walk through nature, or texting with friends when I’m not feeling well enough to hang out in person.
Today, my aim is to become so engaged in doing things I love and enjoying the world around me that I forget to worry about how I am judged by others. It’s an ongoing process, but the approach has brought me a great deal of liberation.
Whether you live with a chronic illness or not, living in a body is a complex experience.
It’s easy to get hooked into unhelpful ideas that urge us to mistrust ourselves and our bodies, suppress our real emotions, and focus more on what others think of our bodies than what brings us joy and fulfillment.
Your relationship with your body is your own, and will likely evolve for the rest of your life. You get to choose how you relate to it, and I fully support you in doing what feels right based on your personality, needs, and sense of fulfillment.
My wish for you is that you get to experience moments — and even a lifetime! — of believing, nurturing, and enjoying the body that you have. Not because anyone told you to, but because it’s yours, and it is worthy of your friendship.
Article originally appeared on March 5, 2021 on Bezzy’s sister site, Healthline. Last fact checked on March 5, 2021.
Fact checked on March 05, 2021
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