Standing a Little Taller

A lot of my life these days is spent feeling stuck. 

Stuck in a perpetual cycle of unwellness, confusion, and futility, unable to take back control of my dignity or power. 

Such is the life of many folks who suffer from chronic illness. I don’t imagine for a moment that where I find myself is darker or more burdensome than many of the issues we all deal with every day. That said, I recently made a decision in trying to work through my obstacles that has produced some valuable teaching moments. At least, I feel they are valuable lessons - I’ll allow you to assess that for yourself. 

To step back for a second, allow me to explain a little more about where I’m at. 

I suffer from an undiagnosed, chronic illness, and am in year five of this journey. It hasn’t been five years of constant intense pain and suffering, nor have I often felt inhibited to an extent that I cannot participate in life.

No, the vast majority of these past five years have been spent feeling weak, run-down, and generally unwell, with more intense spikes of pain and incapacitation sprinkled in for flavour. 

In the last year, however, my illness has gone from being annoying to manage to become something that does, in fact, inhibit my ability to live my life. My muscles are constantly shot (and sometimes, for fun, they uncontrollably shake a spasm!), my head constantly hurts, and my stomach is in a near-constant state of nausea that only sometimes results in a delightful 5 a.m. vomiting oasis.

Now, look: gross. You’re right - gross! I apologize for that being gross!

But I also think that’s important… illnesses like mine and many others are gross, and hard, and simply baffling to the rational mind. Why should we pretend that isn’t the case?

For many years now, not only have I been pretending to myself and others that what I’m experiencing isn’t gross, but I've been running circles around my real experiences and emotions to paint a picture of my health that is normal, if not at most a slight inconvenience. 

The reality is that my life has been very consumed by how I feel. It has become harder and harder to separate the person I am from the illness I suffer. 

What’s worse is that I am unable to name how I’m feeling in order to help anyone around me understand, even on the slightest level, what it’s like to be me. The symptoms I feel suck, but the uncertainty about what I’m dealing with has been far worse. Invisible illnesses that are undiagnosed are pervasive in their ability to infect your feelings of self-worth.

For me, it renegotiated the terms of the contract I had with myself, redefining the rules of engagement and muddying the waters of patience and compassion I’ve worked my whole life to build up. The result has been a looping internal conversation wherein I blame myself for not having figured this out, or not being tougher and less affected by it, and a complete aversion from any and all conversations with folks in my life (even those very close to me) about how things are going. 

--

“Mike, I’ve heard you’ve been feeling unwell - what’s been going on?"

“Uh, yeah, I mean I’m fine! I don’t know, I’m just really tired and weak and sometimes in pain, but like who isn’t! Anyways yeah I’m working with my doctor to figure it out so it’ll be fine."

--

My condition, whatever it is, has taken intentional steps to redefine who I am and how I see myself. It has been focused in its attempt to make me feel lesser, smaller, and meeker. That is why, about two weeks ago, I made a decision to try and take back some of my agency by trying not to hide. 

I shared, really for the first time, some honest feelings about what I’ve been going through with my networks on social media.

Now, for many wonderfully empathetic friends and family, this came across as a cry for help, and the outpouring of support was really very touching. That said, far from being a cry for help, my efforts were intentional and my motives were specifically located elsewhere. 

I have always been an open book, both with those close to me and those whom I engage with in the virtual world. I have always readily talked about how I’m feeling, what we all are working through together, and have made vulnerability a core tenet of my life and work. Yet, for some reason, the shame I feel about my illness has run so deep that I have refused to let that shame become part of the public record.

Of my public record.

My decision to share a bit of my story probably seems insignificant to many, and on a surface level, it did to me as well. I mean, how major can a one-paragraph caption on one Instagram post be in the grand scheme of life? Especially for someone who is already so outspoken about everything!

But to put it plainly, it allowed me to assert my power over my illness and feel better than it, if even only for a moment. 

The greatest power my illness has had over me has been in its ability to make me feel ashamed of myself and to make parts of who I am unknowable to the world. In speaking openly about my source of shame, I stripped away layers of humiliation and took back control of my narrative.

In taking five minutes to write down what I’m going through and making it part of the public record, I was able to stand a little taller, sleep a little sounder, and move forward a little truer. 

The difference I felt instantaneously, before any comments or messages came in, was immense. I breathed deeper than I’d been able to for months, sat down and loved my dog, and walked to meet my partner after her class, excited to see what would happen next in this ridiculous journey of life. I felt prepared for whatever it might be.

So no, it wasn’t a cry for help. It wasn’t a call for assistance in making a diagnosis, or an attempt to solicit sympathy, support, or even hot takes about what might be going on.

It was me, taking the first step in order to return to myself. 

To come back home into the body that is still mine, no matter how shot or broken it might feel. 

To come back home into the mind that I love and trust, even if it is foggy, frustrated, and sad. 

To reenter the reality of my life, as I’m living it, in its organic, difficult, scary, draining truth. 

And hey, it has allowed me to spend the time necessary to see my life as a whole. I am doing my dream job, have a roof over my head at night, food in my fridge, and more love than I know what to do with that I fill up on every single day. 

Here’s to continued growth and the perpetual commitment to shed away our shame in order to stand resolutely, and a little taller, in who and how we are.

- Illustration by Meg Glover (@meggidoodles on Instagram)