“Why Didn’t You Ask for Help?”

by Hailey JohnstonSurvivor, Hodgkin’s LymphomaMarch 8, 2022View more posts from Hailey Johnston

“Why didn’t you ask for help?” Moving Beyond Shame and Into Community

“Why didn’t you ask for help?”

This question was asked by a relative as we were packing my family’s apartment in preparation for moving into our new home, and I have been thinking about it since.

Why didn’t I ask for help?

For those who know me, as you’re reading this, I’m sure several answers have come to your mind. When asked the question though, the answer wasn’t so obvious to me.

Why didn’t I ask for help? This question has circulated my mind for days. I brought it up in therapy, I’ve talked to my wonderful and patient fiancé about this, and now I’m writing about it… for the fifth time.

Each time I have found myself at the keyboard, I’ve written what could be the first chapter to my memoir but have failed to put into words exactly why I struggle so much with asking for help.

And then it came to me.

Shame.

Ohhh shame… that beautiful five letter word that loves to show up in my life when I need community more than I need air to breathe.

Why does this five letter word weigh so heavily on my shoulders? How does shame find a way to make me feel like the burden it actually is?

I am not the burden. Shame is the Burden. 

Now where does this shame come from, anyway?

I spent weeks not being very kind to myself — blaming myself for a feeling and an inaction that has been ingrained into me by people and systems I have experienced my whole life. When asked if I need help, I even have a tendency to say that I don’t, or to simply not respond. And I’ve been aware for years that I struggle to ask for support, but I have never dug into the reason until now.

Exploring distant memories of the experience my mother and I had with Hodgkin’s Lymphoma has been nothing short of overwhelming. This is the time where my shame grew larger than I could have recognized. It was so deeply inside of me, it is only now coming to the surface almost nine years later.

At 15 years old, on October 22, 2012, my mom was diagnosed with Stage 2A Hodgkin’s Lymphoma.

After having no direct experience with cancer in my life, this was devastating news, and my mind began spiraling with all the things that could happen. All I knew about cancer was what had been portrayed to me through the media and the knowledge that older relatives in my family had died from it. I was scared. My family had been living in North Carolina for less than five years, and we had virtually no community to support us locally. And as the oldest of six children, I was preparing to have a significant amount of new responsibility as my dad worked full-time.

My mind was in overdrive, and I couldn’t slow it down. I was experiencing some pretty bad bullying at school, and everything just felt awful and hard. So incredibly hard. Once my mom began treatment, I was averaging three hours of sleep each night trying to keep up with it all.

Not long after my mom was diagnosed, I began feeling sick and missed a couple weeks of school. Despite how sick I felt, I would tell myself, “Well, it isn’t cancer,” and I would push through and continue to do all my homework and the things my mom couldn’t do around the home or for my siblings. During these two weeks, my mom did her best to save her energy for driving me to the doctor to figure out what was going on.

I was tested for strep throat, given a diagnosis of bronchitis and prescribed antibiotics, and had a false positive test for mononucleosis. But as symptoms persisted, I felt like it may have been something else, and my primary care doctor ordered labs. Following the labs, he ordered a CT scan and chest X-ray. My chest lit up like a Christmas tree just in time for the holidays.

On December 3rd, exactly one month after my 16th birthday and on the day of my dad’s birthday, I was diagnosed with Stage 2A Hodgkin’s Lymphoma. The exact same diagnosis as my Mom and only six weeks later.

Everything moved so fast, I didn’t even have time to process what was going on. All of a sudden, my world and the role I was filling as a caregiver for my mother was flipped on its face. Due to being a minor, split-second decisions about my treatment were being made, and I had virtually no autonomy over what was happening.

But during the chaos of getting everything in order for me to begin chemotherapy, cancer no longer felt as scary as the media and ads that portrayed it. I was numb, and my concerns had more to do with who would fill my caregiver role and all of the social pressures that come with high school. I also thought that my experience with chemo would mirror my mother’s, though I quickly realized I would have a much harder time since my chemo regimen was different and far more intense because of my age.

There was no silver lining to having a cancer diagnosis alongside my mother.

Cancer didn’t feel scary for me, because I didn’t have time to even digest the news. I’m 16 years old, I’ve never had any major medical concerns in my life — not even a broken bone, and I had to now navigate systems, paperwork and words that I had never seen or needed to understand before because my mom was sick and tired from chemo, my dad now had to be strategic about requesting off of work since it was no longer just my mom with medical appointments, and I was the only one who could be fully present for all of the information being launched at us like a rocket ship going into space. I had to be my own advocate, despite having no power in the decisions being made about my body, and there was no time for crying.

However, as hard as experiencing Hodgkin’s Lymphoma alongside my mother was, the systems and toxic ideologies I navigated and had been introduced to both growing up and during this time in my life impacted me in ways that made cancer and the aftermath significantly harder than it should be.

The Evangelical Baptist Church is a place where I found hope throughout my adolescence, and it is also the place I began to feel shame and didn’t even recognize it. Shame for experiencing anxiety and not “placing my faith in God,” exercising my voice and “disobeying my parents,” not being a meek and submissive girl to the male figures in my life and having absolutely no interest in playing that role as a wife, having “lustful” thoughts when puberty was at its peak, and for experiencing romantic feelings for folx that are not cis-gender men. I was more afraid of having pre-marital sex than coming out as queer. As a person of faith and not only experiencing, but studying all of the changes, politics, and colonialism that has gone into creating the “values” of many protestant churches today — “values” specifically tailored to make people feel ashamed and ostracized — I can no longer find hope in those walls, nor am I welcomed or wanted authentically.

Compounding the shame of church, there’s the shame of being working or lower middle class that I experienced. Shame for needing government assistance on and off growing up, shame at church food banks from their volunteer staff and the mandatory “evangelism” we had to listen to before receiving the groceries we needed for dinner that evening, and shame from relatives for how my parents were raising us and for choosing to have a large family when my parents struggled so much financially.

And all of this shame showed up during cancer — some of which I am still experiencing now. Shame showed up when church members said we had cancer because of “immeasurable sin” from somebody in our life, shame showed up when asking for financial support through GoFundMe, shame showed up when my parents couldn’t afford our medical bills that insurance wouldn’t cover, despite having the best health insurance policy offered through my dad’s employment. Medical bills that continued through my late teens and immediately impacted and destroyed my credit before I even knew how credit scores worked. This medical debt impacted my ability to get a credit card, apply for student loans, buy my first vehicle, and most recently, purchase my first house.

While we did have some community support during our dual diagnosis, the vast majority of people sent us their thoughts and prayers. The thoughts and prayers didn’t help or prevent this medical debt from happening. If we had a dollar for every thought and prayer we received, I probably never would have had medical debt. If every person who says a cancer patient is in their “thoughts or prayers” called their senators about improving healthcare, the 1.6 million people diagnosed in the United States annually would probably have both better access to care and no debt. And as someone who does believe in prayer, as someone who does practice this in my own life, I will also say that I believe prayer, in the evangelical context, is the laziest excuse of “care” when used without intention or the desire to do more. Thoughts and prayers are two of the first statements shared with me at the beginning of my treatment for Hodgkins. Of the people who expressed they were praying for me, I can name two who are still in my life, nine years later.

When I went through a recent breast cancer scare and experienced a finding that required a lumpectomy, my found family showed up for me in ways my church and religious community didn’t. My found family, many of whom were raised within and have been rejected by the church like myself, showed up for me in the most authentic and loving way. Three years later and I still talk to all of them on a weekly basis. Being queer, I have experienced the most authentic, shameless love of my life. I have experienced community through my queer identity that has been so compassionate and honest, it has made me understand my own spirituality in ways I couldn’t in community with those who would shame anyone who was brave enough to love themselves authentically. A community that says they welcome all, but only conditionally. A community that made me feel like a burden for speaking up, being gay, and for having an illness out of my control.

I am not the burden. Shame is the burden. And shame is not my burden to carry.

This article was featured as the cover story of the 2022 March Faith and Spirituality issue of Elephants and Tea Magazine! Click here to read our magazine issues.

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