How My Chronic Illness is Redefining My Relationship with My Body

Written by Madeline McCallum

For the past four years, I’ve known something has been off in my body. I haven’t felt “normal;” I’ve always felt slightly incapable of fully participating in life the way that other twenty-somethings do. But compared to the years before that I spent battling an intense eating disorder, this didn’t seem like anything to complain about.

Fast forward to last summer, when my symptoms drastically worsened and became neurological as well. I developed vertigo, I got lost on my routine walks home from work, and I even forgot my own name sometimes. Walking up the three stairs from my bathroom to my bedroom felt like climbing Mt. Everest, my brain struggled to connect thoughts, I developed a sharp tingling in my spine and chronic pain in my upper body. I’ve now been on the long, confusing road to figuring out a diagnosis – which, let me tell you, is a whole lot harder than I thought it would be in the 21st century. It turns out, we don’t actually know that much about chronic illness. What it is, what is stems from, what proportion is purely physical versus internal trauma manifesting as physical disease (shout out to my man Bessel van der Kolk).

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This has brought the concept of “living in the gray” to a whole new level. I’m in a very in-between stage right now, still trying to get to the bottom of all the health complications. There isn’t really a pretty label or a diagnosis all wrapped up in a bow. And I’m having to sit in the midst of it all and be okay with that. And understand that there may never be a clear answer or a medical term I can look up on WebMD. And that’s okay! If I’ve learned anything from my years in ED recovery, it’s that life is so much more nuanced than that. 

The other day I was sitting in the bathtub and for maybe the first time ever, I looked at the folds in my stomach and didn’t feel any judgement or disdain. Instead, I almost broke into tears of gratitude. The softness, the suppleness of my stomach felt so gentle compared to the YEARS I have spent trying so hard to break my body, berating her and using her as a vehicle to mask my emotional scars. And yet, she has still fought for me, diligently and relentlessly. She pulls up the bootstraps, ignores my misguided attempts at control, and carries on breathing, moving, feeling, and functioning to the best of her ability.

I looked at the folds in my stomach and didn’t feel any judgement or disdain. Instead, I almost broke into tears of gratitude.

In that bathtub, this message came through clearly: You are not trapped in your body, it is your home.

It made me think about how I wanted to approach my illness differently – instead of raging against the pain, numbing and fighting it, maybe I can listen to it? Maybe it is just trying to tell me something really important. 

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The way I view my body has gone from “How can I control you” to “How can I help you?”

There is no guilt, because I am eating, and just plain existing to be honest, pretty intuitively. I’ve gotten really still. I ask my body what she wants, and I give that to her. The key has been learning how to uncover what my body TRULY wants and the language in which she communicates with me. Underneath all of the emotional wounds and the inner child that is crying out to be recognized and nourished, is a body that is very clear on what it needs in this moment.

The way I view my body has gone from “How can I control you” to “How can I help you?”

By doing the emotional work that comes along with trying to ease chronic pain, I’ve simultaneously uncovered the hotline to my body’s operations. I’ve learned that actually, she doesn’t scream and shout, she doesn’t frantically crave anything and everything in front of her. She waits patiently for the call – when it doesn’t come, she gets frustrated and may activate old wounds just to get my attention. But when I regularly and kindly dial up that hotline – 1-800-HIBODYHOWCANIHELPYOU, or something like that? – she is always on the other end, with a clear, intuitive answer. “I’d like a tall glass of water with some lemon and some pickled red onions, please.” (I’m not promising the responses are going to be normal/predictable, just that if you take the time to listen, they will be there).

I don’t impose rules – there are no timeframes, no “good” or “bad” groups, no party vs. weekday foods. I simply listen to what makes my body feel nourished, happy, satisfied, and to be quite honest, not riddled with pain and inflammation. It’s a far cry from defining “making my body feel good” by the effect I think it will have on my appearance. It used to be all about manipulation, deceit, cutting corners, and trying to numb out. Now, I just want to quell the fire in my spine, to ease the crushing anxiety, to nourish my cells so they can repair themselves like they are PROGRAMMED TO DO. It’s pretty amazing – when given the right tools and correct care, our bodies really are designed to heal, grow, and prosper. They already have the strength to heal from within – we’ve just got to let them.

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That immense strength can only be unlocked in a somewhat paradoxical way, as it seems life tends to give us most lessons. There must first be a softening – a surrendering, a letting go, a metaphorical fuzzy blanket and internal hygge-ness. In his book Letting Go, Dr. David R. Hawkins says, “Continual surrender brings healing at the level of inner being.” I’m not sure if I would have ever been willing to completely surrender to the level needed if it wasn’t for this mystery chronic illness. There has always been an excuse, a should/would/could, a reason to push harder. Now that I have literally been brought to my knees more times than I can count and truly just wake up every morning hoping all of my limbs function properly, the softening has become not only imperative, but also merely a side effect of surrendering to the power and knowing of my body. 

For the first time, I am beginning to figure out what I actually look like as a woman. Before I even fully went through puberty, I started tweaking, altering, adjusting my body, whether through food, exercise, or just dysmorphic glances in the mirror. My body type is naturally athletic, I’ve always had visible abs (just consult my 5-year-old family beach photos for proof), but what is my natural, grown-up stomach? What do I look like if I don’t do a specific set of side-crunches every week, if my favourite form of exercise is long walks in the park? It’s become a curious, almost exciting thought, one free of judgement and expectation. 

As I’m going through this healing journey, the only thing that matters to me is feeling better and getting back to the life I’ve worked so hard for. I haven’t put so much time and effort, grit and tears, into recovery only to have my life stolen again by a physical mystery. Haven’t I been craving this life I was just beginning to discover? A life full of ups and downs, of highs and lows that aren’t numbed or locked away or ignored? I’ve been carving out a new path that allows for colouring outside the lines, that sees mistakes and failures as just as valuable as A+’s and gold stars. So as I get more comfortable with just being, tuning in and listening to what my body needs to heal, I wonder: who am I becoming? What will this butterfly be like, once she has broken free from this cocoon and can finally spread her wings wide?

What I’ve learned from battling an eating disorder is that I am TIRED of depriving myself of life.

What I’ve learned from battling an eating disorder is that I am TIRED of depriving myself of life. Now, here I am in the midst of something that can feel like it’s taking my life, that can feel really unfair and soul-sucking. I am realizing this illness is a vehicle for much more than just physical healing – it’s an opportunity to finally let go of old programming and subconscious limiting beliefs that are still holding me back. I want to fully receive the messages this is giving me and the lessons I’m finally understanding about my body and its capacity to support and heal. And I am determined to find joy in it, to realize that the butterfly is still a butterfly throughout the entire process, even if she is shape-shifting and still growing her wings.

Madeline McCallum is communication maven, strategy nerd, lover of beautiful things, and stubborn user of the Oxford comma. Find more of her here.