The following post is part of the The January Project: Chronic Illness. A month long project where I research and write about chronic illness. The information presented in this project is intended for educational purposes only. My hope is to increase awareness to help those living with chronic illness and to offer clarification to anyone who knows a person living with chronic illness.
They were tough. They carried all the emotional baggage of men who might die. Grief, terror, love, longing–these were intangibles, but the intangibles had their own mass and specific gravity, they had tangible weight. They carried shameful memories. They carried the common secret of cowardice barely restrained, the instinct to run or freeze or hide, and in many respects this was the heaviest burden of all, for it could never be put down, it required perfect balance and perfect posture. They carried their reputations.
— Tim O’Brien The Things They Carried
No one prepared me for the shame that came with a chronic illness diagnosis.
In the initial doctor appointments, after I was diagnosed with cerebellar atrophy, I was offered pamphlets on healthy eating, effective communicating with your spouse and the importance on scheduling and keeping doctor appointments.
But no doctor leveled their eyes into mine and explained that along with the physical ailments of my illness I was going to feel shame. Heavy coats of shame that weigh me down, make it hard to move, hard to breath.
No doctor warned me about the shame I feel every time my children ask me to ride bikes with them or my friends invite me to play basketball or the light bulb burns out in the hallway and I have to ask my wife to climb a ladder and to change it.
Somehow the male ego has skirted 200,000 years of evolution.
Both ancient and modern males fear weakness and dread failure. They crave strength and victory. They pride themselves on being a provider and protector.
Modern men avoid doctors appointments and hospitals and undersell pain (except when we have the flu). We don’t admit when something is wrong or even acknowledge something that may be perceived as weak. When something bothers us we often emotionally recoil. We become distant.
Men we would rather be labeled a loner then a loser.
Because men define themselves by their ability to do impressive things. Things that require strength and stamina. We are independent, prideful forces who find and polish important hunks of our identity from our ability to do physical things: run, jump, climb, protect, carry and build.
So when we are suddenly dependent, when we lose our physical abilities, our capacity to do impressive things– we lose ourselves.
For 33 years I defined myself by the games I played. I was an athlete.
As a child and through my teen years I played soccer, baseball and basketball. In college I played varsity soccer. Throughout my 20s and into my 30s I coached high school soccer and played third base on a competitive softball team.
Then I got sick.
I was unceremoniously forced into retirement.
I was patient now.
A weak and wounded patient.
Normalizing: A Crucial Step.
Research has shown that “normalizing” is a crucial step for anyone, especially prideful males, living with a chronic illness.
Normalizing means a willingness to adapt to a new life of chronic illness. It’s having the integrity to be more resourceful and find or invent ways to minimize the impact the chronic illness has on daily life. It also requires letting go of the past, letting go of dreams and aspirations and placing a greater value on the present.
However, when a patient refuses to normalize their illness by hiding their limitations, a patient may cause additional physical damage as well as deepen their shame.
When ill people normalize symptom control and regimen, they increase their capacities and maintain normal health.
Theoretically, normalizing is a logical step for a chronically ill patient — refusing to let a chronic illness control your life, forge your identity.
I learned that normalizing can take years of accepting before conceding. For me, normalizing meant my chronic illness had won. It meant I was a loser.
A side note: The difference between shame & guilt
When I began this research, I was interchanging shame and guilt.
Though shame and guilt are close cousins, there is a distinct difference between the two.
According to Dr. Brene’ Brown:
Shame is a focus on self. Guilt is focused on behavior. Shame is “I’m bad.” Guilt is “I did something bad.”
With some digging men can admit guilt. But shame is much deeper. Shame is buried. Shame needs an excavator.
Men are not immune to shame.
We often just hide it better than women.
I still wrestle with shame.
It’s been five years since my initial diagnosis and I am still trying to normalize.
And I know I shouldn’t be ashamed of my illness but some days I am.
I am a husband and a father. The leader. The patriarch. I am suppose to be physically strong. My family expects me to be strong. You expect me to be strong.
But some days I’m not.
Let me be clear– this was a really hard piece for me to write.
I’m prideful. I’m concerned about my reputation. I’m worried about what you will say about me when I’m not around and if it will be awkward the next time we see each other.
And yet I know if I do not announce my shame I will continue to struggle to normalizing my chronic illness.
I want you to know I have never talked to anyone before about shame.
Ever.
Shame has never been a hot subject between hands at a poker game or between bench press sets at the gym.
(In fact while writing this, I kept thinking about what the guys in my fantasy football league would think and say. How much ribbing I would take at the post season banquet.)
It’s much easier for men to silently struggle with shame.
So we do. We build facades, we deploy smokescreens. We lie to you. We lie to ourselves. And we do the thing we’ve been trained to scorn the harshest–we hide.
According to Dr. Brene’ Brown, shame is highly attributed to addiction, depression, violence, and suicide.
I personally know men, seemingly strong men, who have fallen victim to all of those dangerous behaviors.
And I know if I didn’t create Write on Fight on and share my story with you, I would have fallen victim myself.
Here are some resources if you want to learn more about shame…
I highly recommend watching Dr. Brene’ Brown’s Ted Talk “Listening to Shame”. The 20 minute talk offers tremendous insight on how damaging shame can be. I personally enjoyed the last 5 minutes where Dr. Brown discussed how shame affects each gender differently. Also, this video provided me some much needed motivation when I was afraid to write this piece.
The Handbook of Social Studies in Health and Medicine– It’s a bit technical but provided interesting research on experiencing chronic illness. You can find many excerpts of the book on “Google Scholar.” I found Kathy Charmaz’s Experiencing Chronic Illness (2.6) really helpful with my research.
Shame is Why We Fight— Published on thegoodmanproject.com, this article explores how and why male shame is often the root of tension in a marriage, and if not addressed, can quickly deteriorate a marriage.
Related Original Writings on Masculinity, Shame and Chronic Illness:
The Scary Work of Redefining Yourself (Originally published on November 3rd, 2017)
The Day I Learned I Could No Longer Jump ( or Learning to Fly) (Originally published on October 26, 2016)
A Vulnerable Man