Does My Chronic Illness Define Me?

Earlier this week, I read this quote on This Thing They Call Recovery’s Instagram page:

“I am defined and limited by my chronic illness, but it is not the total sum of who I am.”

I understand what it means to be limited by my chronic illness: I am outspoken about learning how to work within your limitations to live a full life beyond illness.

But I didn’t immediately understand what it means to be defined by my chronic illness and how that is separate from recognizing that it isn’t the totality of who I am.

Am I making the effort?

I have written about how chronic illness isn’t the center of my life, but that it does affect every single part of my life. That is a reality that I’ve had to make peace with. It is something I consistently remind myself of, especially since so much of my oeuvre involves writing about life with chronic illness.

I have found a new voice and purpose through my diagnosis, and that is the so-called silver lining I choose to pay the most attention to when I think about how my life has changed over the past three years.

Consciously and subconsciously, I spend a considerable amount of time making sure that I am not using my health status as a crutch or as an excuse to not make an effort.

But this isn’t uncomplicated. Chronic illness’s favorite psychological treat is self-doubt. There seems to be a fine line between listening to my body’s cues and not necessarily being able to do what I want when I want, and just not doing something because of health anxiety. Intellectually, I recognize the difference, but so much of what colors my self-criticism has little to do with what I know to be true.

It has to do with what I believe others’ reactions will be.

This makes inroads into dangerous territory because I can then allow my self-questioning about my efforts contort into an indictment of not doing enough to care for and heal myself. I can trick myself into thinking my loved ones believe this too, which holds my insecurities in further thrall.

Am I a bore?

I have chosen to give my pain a purpose, and I see my purpose as advocating for people like me: those living with chronic illness. I speak and I write about chronic illness because it feels like my responsibility as someone on the frontlines. I don’t want a single person to feel more alone in this experience than they have to. But that does mean that I sometimes catch myself mid-sentence, wondering if I’ve become a bore who only talks about life post-diagnosis.

But the unavoidable truth of my life is that I experienced a profound overnight episode that changed me, as well as how I see myself and the world. There has been a stripping away of the inessential and what I’m left with is a deep gratitude for what simplicity and focus has added to my life.

If that makes me a bore, so be it.

Self-definition

I know that I am more than the sum total of my chronic illness. I have people in my life who won’t let me forget that fact. Chronic illness has invited me into uncharted territory so that I am discovering who the sum total of me actually is in the presence of constant pain.

What does it mean, then, to be defined by my chronic illness? My health status does not describe the meaning of me, the essential kernel of who I am and what I'm capable of. It doesn’t describe my nature or potential.

But it does mark out my boundaries and limits. It has reconfigured what I am able to tolerate and how fiercely I will protect my energy. If I am a river, chronic illness is the shoreline on either side, reminding me when I’m flooding what I know is important for my overall health and wellness with too much.

The importance of language

Someone close to me recently said that they don’t want me to be “defined by” my health. I puzzled over what that meant just as I did when I read the aforementioned Instagram post. And then I realized where my confusion lay: the story I told myself was that this loved one was saying that they don’t want me to become my health, like that is the beginning, middle, and end of who I am. I understood their concern as one of false equivalence.

But that is not what they were saying.

I know that my misconception has so much more to do with my own insecurities because I fear that false equivalence. I am vigilant of chronic illness’s role in my life because I never want to be nothing more than my health status. I see the dangers in seeing myself as nothing more than what my medical chart may say, and that is a place void of hope—and that, I believe, is what my loved one was trying to convey.

This, I can understand.

That’s why I am careful to always say I or people like myself “live" with chronic illness. I don’t want to over-identify or claim too much ownership over something that has taken up so much space in my physical body and psyche. To do so feels like saying that I have to make a choice between my health and a fulfilling life—and there is no choice there.

One should never have to be at the expense of the other.

This is really about you

I want you to know that your chronic illness may define you, but that is not the same as saying that you are equal to your health condition. That’s a false math that can trick you, if you aren’t careful.

The way to avoid this equation is through the way you speak to yourself about yourself. This is a deceptively simple point, but it takes intention and effort to make sure you are not seeing yourself as just a system of symptoms and side effects.

I want you to know that it is valid to feel a mixed bag of emotions when you see your limitations. You will likely test those limits more often than you even realize. But you will also learn to surrender to the power they can restore to you, especially when you feel like you are particularly low on spoons.

I want you to know that I see you making the effort. You are not a bore. You are defining yourself and your experience, and you will continue to do so until your last breath.

That is courageous. That is magnificent. That is bittersweet. That is life.