Grieving Who We Were Before

I can’t say I completely knew who I was before chronic illness began its work on my physical and mental health. After all, it started early for me. Right around fourteen to fifteen years old. I was busy finding my place in this world, falling in love, building friendships and not having a care in the world.

Then the symptoms came. They were subtle at first. Numbness in my hands. Aches and pains here and there. Nothing that signaled to me that I was about to begin the toughest journey of my life.

But as time went on, the aches and pains progressed. I recognized my body wasn’t quite functioning the way it should. I could not trust my body, but no one believed me. My journey of being undiagnosed for almost a decade, while experiencing the sense of loss that comes with chronic illness, frequently put me in a profound state of sadness.

For much of my life I have treated my grief around having chronic illnesses as something to overcome rather than a capacity. I mean, after all, that is what many of us have been taught. No one ever talked to us about what to do with our grief other than you overcome it.

We can acknowledge that grief is something that we all inevitably go through, but I never thought I would have to experience so much of it, especially at such a young age.

It is a truth that so many people with chronic illness live with everyday. We grieve in our endings, our beginnings, and all the choices in between. We exist in the liminal space of a series of deaths and rebirths.

Nobody told me that many days I would wake up feeling betrayed by my body.

Nobody prepared me for being in some degree of pain daily.

Nobody prepared me for what that does to your mental health.

Nobody told me that some days, I won’t recognize my life.

Nobody told me I would be surviving an infinite medical trauma loop.

Nobody told me I would experience identity crises that demand I pivot constantly.

Nobody told me I would be grieving the life I worked toward and I did not get.

When living with chronic illness, grief shows up everywhere.

It shows up when you do not have the mental capacity to work past 2pm, because of severe brain fog or body aches. It makes sitting upright feel like an Olympic sport.

It shows up when you question your sanity while sitting in a doctor’s office as a 15 year old child being told that you’re just a tense person and having that continue for almost another decade until one doctor takes you seriously.

It shows up when you go through all your personal days in a few months, leaving you to deal with the financial ramifications of unpaid sick days. After all, being chronically ill is expensive.

Even worse, you may dread telling HR that you need accommodations to do your job, while simultaneously dreading the possibility you may be fired for not being able to keep up—ask me how I know.

The person you were becoming and the plans you made are getting derailed or have to be restructured to accommodate your new life and the person you’re becoming.

The worst part is everyone expects you to be okay with it. To just push through. They assume it can’t be that bad, because you don’t really look how you say you feel.

They think you simply need to learn how to adapt and pivot. No one seems to ask the cost of doing that.

And the absolute worst of it is when they say “Be grateful.” This one makes me want to scream.

As I work on becoming a social worker, I can’t help but think of chronic illness and grief from a person-in-environment lens. How does my family, community and wider society help or hurt me in my grief?

I recognize that we are all forced into the ideals that we cannot stop moving even when our bodies put up a resistance. This impacts everyone, but for people with chronic illness, there is an added pressure, even when we want to give ourselves grace. We sometimes walk away feeling like we’re failing or not doing enough. This feeling gets amplified, especially when you get into the role of parenting—specifically motherhood.

I am learning that pain and grief are treated like an ecological disruption of our society. Our human bodies, seen merely as something to extract from, but never truly something deserving of care.

I recently saw this question being asked. “What does it mean to treat grief as a capacity and not a failure?”

It means accepting we will all experience it, some more than others. After all, so much of healing work is grief.

It means accepting how our mind and body process the loss of our old life, energy and independence, and honoring that loss.

The best thing we can do for ourselves is to drop the timeline on grief, and allow healing to take as long as it takes.

Chronic illness has asked us to become acquainted with a version of ourselves we never expected to meet. We do this all, while still carrying the memory of who we were before. As we engage in this dance with grief we can embrace more of who we are becoming. We can pivot and we move forward.

Looking for a gentle space to talk about the gray areas of chronic illness? Join our private community, The Chronic Life Lab, on Facebook.