Earlier this year, I was reading creative coach Jen Carrington’s newsletter and, in it, she mentions the grief cycle of chronic illness. It was a brief mention, but I could not get her words out of my head. I thought about what they meant and found myself understanding my post-diagnosis thoughts and feelings in a wholly new and compassionate way.
What I finally did understand — at that point about a year and half after being diagnosed with trigeminal neuralgia (TN) — was that I was in grief. Deeply.
A different meaning of loss
The thing no one tells you about life with chronic illness is the role grief will play. It has been one of the most surprising parts about this journey for me. Intellectually, I know that it is impossible to experience major changes in your physical health without psychological repercussions, but I was still not quite prepared for the toll chronic illness has on emotional health.
Though I know that grief can strike whenever we feel a deep loss, I unconsciously equated grief with loss of life. It took me sometime to acknowledge and accept that a loss of life is not just defined by the death of a loved one; loss can also be defined by a radical change in life. A health diagnosis indisputably falls into that category.
Those five stages
I know the five stages of grief — denial, anger, bargaining, depression and acceptance — are controversial, but they give shape and form to complicated thoughts and feelings in the wake of loss. However imperfect, those stages allow us to articulate what our experience is like.
Two years into life with chronic illness and I now understand that I am stuck in a spin cycle amongst those first three stages.
That’s the other thing: the five stages are not linear. They are more like a messy curlicue.
Denial comes first and it is a benign-seeming monster. Do not be fooled: denial is arguably the most insidious. Once I was diagnosed with TN, I followed all the advice of my doctors with rigid discipline. My rulebook and checklists were full and followed to perfection, but this does not mean that I embraced my diagnosis. I see the many times when I have questioned whether the pain I feel is real. For instance, if I do not feel pain for literally one second, I let myself believe that I made it all up. But then, my body rebels and proves to me that the pain is real.
Then, there are the times when I am not as mindful of my triggers — including talking, smiling and laughing — or I do not advocate for what I need, particularly during inconvenient occasions like family get-togethers. I force myself to push through, but I pay a heavy extra-pain toll for every time I do not look out for myself.
The heart of my denial has to do with testing my limits (consciously and subconsciously), and a lack of self-agency and self-trust. I now believe that denial’s power does not come from a lack of acknowledgement, but a lack of self-trust. It makes you doubt yourself and that is acutely damaging.
Anger is relatively simple. As much as I have done my best to stay positive, and though there are some real blessings that have come out of this experience, I am so angry.
I am angry at: how this diagnosis has depleted me and introduced so much uncertainty into my life; at how isolating, anxiety-inducing and saddening it can be; at the side effects of my medications and how every time I try something new, I feel like I am back at Square One; at how easily I hope and how just as easily I get disappointed; at how I have to give health practitioners who do not know enough about my condition a crash-course in it while I sit on their examining table; at how boldly insensitive people can be in the face of invisible illness; and at the fact that there is no cure or direct medical intervention for TN.
What I am learning about anger is that it is loud for a reason: it is screaming for acknowledgement of sometimes the darkest, loneliest feelings so that they can be brought into the light. In a way, I feel my anger is asking me to trust myself to heal, if not to full physical health, then to full emotional health.
I was not sure what bargaining is until I started writing this piece. I know that ultimately it has to do with control over your situation. The example I read so often goes like this: If only I’d taken so-and-so to the doctor sooner, perhaps I’d have had more time with them. There is a painful underlying logic in how we may explain the loss of a loved one, specifically why that loss unfolded the way it did. I believe that with chronic illness, bargaining behaves slightly differently.
For me, I have honed into why I have TN with self-blame. This year, I have asked myself more times than I care to admit what I did to bring this on. I do not mean this in a karmic sense, but more so in the Napoleon Hill sense: if thoughts become things, what thoughts did I have that brought on this health diagnosis? As with so many chronic illnesses, the true source and onset of mine is a mystery and so, it is not hard to see why the bargain I seek is: If I didn’t think/do ‘x,’ I wouldn’t have this.
But this is just not true. And more importantly, it is not helpful or healing.
This is about you
I do not know when I will cycle out of these first three stages and move onto depression and acceptance. In more ways than one, depression has been present throughout my experience so far. It is not constant, but it is there and I do believe that it is getting louder. When I have a deeper understanding of what that means, I will tell my story.
But all of this is really about you. I want you to know that not all loss is about physical death. Chronic illness sets off a series of losses, and it is only natural to mourn your life and even your dreams pre-diagnosis.
There is so much hardship that comes out of living with chronic illness, but there are also bright, shining pockets of joy, if you show yourself the kindness and compassion you deserve.
Your new limitations are not a death-knell. They are just the shape of a new life. The best place to start is not to judge your thoughts and feelings. As hard as it feels, the only way out is through, so allow yourself your grief and know you do not have to do this alone.
Note: This piece was first published on my blog on October 9th, 2019.