Coming to Terms With a Misbehaving Body


“We are not human beings on a spiritual journey. We are spiritual beings on a human journey.” – Stephen Covey

This is what my body reminds me of daily. That I am a fierce and powerful spirit accidentally trapped into this human journey.

This, I believe, is the problem. My body is not, and cannot be, large enough and free enough to accommodate such a spirit. And that, I believe, is why my body rebels. I like things, but my body resolutely doesn’t. And I can’t entirely blame it either. It didn’t choose me to be its partner on this journey.

Plus, it has compromised for years. We sprinted, we played netball, we played football. We rowed, even though we couldn’t swim. We played rugby, even on the days we had gallons of blood taken out of us for investigations that bore no fruit or useful results. We tried to make it work. But I always wanted too much. I didn’t know how not to overcommit myself and find balance.

So my body made me. One day, it decided it had had enough and shut me down and rebooted me rather differently. And it’s only now, four years later, that I’m realizing why my body and my spirit have such an adversarial relationship; they’re too alike. They both exist at the extremes.

By my estimations, 18 out of the last 31 days have been incredibly painful. So painful sometimes that the most I can do is lie down and read. I regret it at the time, reading a book in a day, feeling like I am frittering time away, but I am learning to stop pushing my body through the pain. I am listening to it, and giving it the rest that I think it is demanding.

I don’t speak much about what my body goes through. And that’s partly because I forget that I’m sick when I have been well for a long time, even the things that should be hard to forget. Like how I stopped going to lectures in my second year and revised for all my exams from bed. How I got up from bed and walked to each three hour exam to return to bed afterwards.

I don’t speak about how I would pull my mattress onto the floor every night and drag it back on in the morning because the bed height made me feel dizzy and nauseous and that was the only way I could sleep.

I don’t talk about how I start fainting in my sleep sometimes. How I start fainting on trains. In the bath. On the street. I once fainted down the stairs and I didn’t tell my parents so they wouldn’t stop me going back to university.

I don’t talk about how I feel extremely nauseous about half the month. How I am extremely fatigued most of the time.

I don’t talk about how I feel because there is no name for the things I go through because doctors don’t know what’s wrong with me.

I also don’t talk about how I feel because it’s not the worst I could feel. And it’s certainly not the worst I have felt. Most of the time, I can stand in a queue in the supermarket without starting to faint, and that feels like progress. I haven’t abandoned a basket of shopping at the till in years. I manage to go to the gym (sometimes). I manage to do 75 to 90 percent of what I set out to do in a day and since I don’t watch TV, I feel like what I lose to illness is what other people lose to television.

I don’t talk about what I go through because I don’t want people to feel sorry for me, or worry about me, or ban me from their Color Run birthday parties. I don’t want to seem whiny. Or weak.

But I am. I am a four-year medical mystery, my body is weak, I never look as bad as I feel, I frequently pretend I’m fine and I live with the uncertainty of not knowing how to make myself better or if I’m ever going to get better.

I sacrifice my body so that I can seem fine. I push myself too hard, too far and too fast.

But when I began to open up about it, other people started telling me about what they were going through, and I realized that I’m not isolated in this at all. The way we conceptualize strength and health and success makes it hard to talk about things like this.

I’m OK, but my body is not. That’s what I’m traveling through right now.

This blog was originally published on Medium.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Undiagnosed

Cohen getting his infusion.

What I Hope for as the Parent of an Undiagnosed Child

Have you ever had a hard time trying to determine which way was up or down… left or right? If you have ever felt lost in the dark, trying to feel your way out, you may understand where I’m coming from. I have learned the hard way that every question doesn’t necessarily have an answer. And [...]
receptionist giving clipboard to patient through window

To the Lab Employees Who Have to 'Deal With Me' Again

Dear lab employees, You may have noticed that I frequent your lab more often than other patients. And you may have found it strange that I have unusual testing done during many of my visits. I’m writing this letter for myself. Not because I owe you an explanation, but because doing so will make my [...]
woman sitting on a white bed and looking out the window

Why I'm Choosing to 'Keep Calm and Carry On' Despite Remaining Undiagnosed

I am a 37-year-old wife and mother to one exceptional toddler. I am a dedicated volunteer and champion for rare disease awareness. I am also a SWAN (syndrome without a name). I have lived the majority of my adult life with a variety of confusing symptoms. I have undergone many diagnostic tests over the past [...]
girl hugging chest covered in floral pattern

When I Try to Describe My Undiagnosed Illness to a Healthy Person

You wouldn’t believe me if I described to you what my life is like with chronic illness. You couldn’t fathom what the last decade has been like for me from the severe debilitation, to the abundant lab draws, to the constant poking and prodding, and the idea that I am living this mess without an [...]