Whiteness & Autoimmunity

Sometimes creativity & clarity just come.  You weren’t prepared, caught off guard even.  And there is this deep peace, this deep knowing in your body.

Yesterday I had this experience while making breakfast, and then while drinking coffee outside.  Simple everyday moments.  Making coffee.  Cooking a pork patty & cutting an avocado.  (yep, that really was my breakfast!)

I had gotten almost 9 hours of sleep the night before, and had spent the morning finishing up a book on whiteness.

I had just finished the first draft of my book manuscript 5 days before.  And while writing this draft I knew that there was this invitation for me: to compassionately notice how personal and collective healing must be intertwined.  How my healing journey has also included a spiritual and racial awakenings. To dig even deeper into my longings and desires and stories.

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I started having significant issues with my health at age 14.  Blood draws.  Heart monitors.  Stress tests.  Surgeries.  MRI’s.  All these became a pretty regular part of my life.

What’s also important to say is that both my parents are white.  They both worked for a chemical company as engineers.  They both had excellent health insurance.  They had already paid off our house.  They had access to excellent doctors (and therefore so did I) and had flexible enough schedules with enough paid vacation so they could take me to these numerous appointments without having to worry if they would lose their jobs.  They had friends with power & privilege to ask for referrals and get me into certain doctor’s offices.

I grew up in a town that was 97% white.  I had white parents, white teachers, white friends, white doctors, white dentists, white pastors, white coaches…..and was told from a young age that I could trust authority.  Not only that, but that I should respect and listen to authority at all costs.

And then starting at 14, I was in and out of doctor’s offices repeating my symptoms—and being told that I was fine.  Over and over again.  Already 2 years later, I started editing my story, hoping that I would have a better chance of being heard, of being believed, of being diagnosed, of being treated.

I was interrogating whiteness and I didn’t know it.  I didn’t have the words, the constructs, the setting, the relationships to realize what was happening.

I knew that to be heard I had to be rational.  I had to be objective.  I couldn’t cry or show any emotion related to frustration or anger.

That’s the language that the white male doctor spoke.  And I had to learn to speak it if I was going to survive the medical system.

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Even as I moved, and I had doctors of differing races–the language still dripped of whiteness.  The medical schools, the Western thought & training–couldn’t be ignored.

The numbers & data was believed over personal experience, by everyone.  We all, to some degree or another, had internalized this belief that the doctor is the one with external healing power.  They must be right, and I must be wrong. They can heal and I am the one in need of healing.  This binary of doctor/patient had to be adhered to–or the whole construct would come tumbling down.

I had a white female endocrinologist at Northwestern Hospital in Chicago throughout college.  She was willing to put me on medication even though I couldn’t prove with the blood tests to date that I had a thyroid disorder.  We had a good working relationship until it just wasn’t anymore.  She started nit-picking at my weight, looking at the scale and shaming me that losing weight was so difficult.  She criticized me when I only worked out 5 times per week instead of 6.

I walked out of that appointment at 21 years old–and I knew what was happening.  I was being blamed in any way possible, because she didn’t know how to help me.  Her inability to “fix” me made her angry–especially as she worked at Northwestern and had numerous credentials.

I saw another painful aspect of whiteness at work: emotionally shutting down and/or becoming angry from a place of not being in control anymore.

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I was a deeply imaginative, empathetic, intuitive child—and I shut down a good portion of this creative part of myself–in exchange for becoming a competitive track athlete.  But, of course, it didn’t go away altogether.

I spent my summers running in meets in Detroit, Lansing, Battle Creek.  In those early years at 9 and 10 years old, I had experiences of what it felt like to be the only white sprinter, and I am deeply grateful for this part of my childhood.

And I remember what I noticed as I went down to Detroit, and then drove back up to Midland, MI over and over again over several years.

Even as a young kid, I knew that I had access to resources that my black track friends in Detroit didn’t have.  I never wondered if I could find starting blocks to practice my starts, or if there would be a rake for the sand in the long jump pit.  I knew that my city would have money to have the track re-surfaced.  I knew that the high school track I practiced on was of higher quality than some of the cinder tracks I ran on in Detroit.  I knew that in the off-season I had facilities to run on, whether indoor or outdoor.  I knew that my parents would just pay for my uniform and that as a track club, we wouldn’t have to put on a fundraiser to buy what we needed during the season.

But at 9 years old-I already knew the power of silence.  The only comments I heard adults saying were complaining about why Detroit hosted meets if they didn’t have enough volunteers, or a reliable clock, or enough resources, according to their standards.

I knew that the adults felt that the meets they put together in Midland were exceptional because we had a press box and made announcements quickly, because the meet ran on time, and all the volunteers knew what their role was during the day.  “Our” meet was better because it was efficient.

I kept all these observations inside.  I already had internalized that I shouldn’t question the status quo, that white authority figures are to be trusted at all times.

Because of my sensitive nature, this created a deep guilt for having everything that I had.  A deep guilt around being white.  And also a deep aloneness in feeling like I couldn’t talk to anyone else.

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Growing up white without a sense of racial identity, and feeling the heightened sense of guilt because of my racial disparity observations–I felt like I only had two options.  Be overly kind to people of color and/or try to help them.

Another aspect of whiteness at work: Dealing with difficult emotions is troublesome and uncomfortable.  Let’s find a way to still be in control and yet serve.  This makes me more comfortable and looks “Christian.”

Growing up in evangelical Christianity as an intuitive, sensitive white girl was heavy.  I was to deny myself, serve, & suffer.  That’s how I knew I was a Christian.  God loved me, but he was also angry at me for all my sin.  Jesus forgave me, and all, and yet I was still invited into a life of suffering.

So what was encouraged from the all white male leadership from the pulpit? To go where there is deep suffering–and share the gospel.  (aka: this would help with my white guilt, still putting me in a position of power & yet service).

That rhetoric influenced my life deeply–both in body & soul.  Jesus, as the White Savior, was who I was to emulate.  The white evangelical church encouraged my white guilt complex and my white savior complex all at the same time.

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There are many, many more stories.  And I will share over time.  And yet while making breakfast & drinking coffee yesterday, I sank into the reality of how “whiteness as the air I breathe” connects with autoimmune disorders, connects with my life with Hashimoto’s.

Yes, people of all races have chronic illnesses.  And, I believe that while the symptoms might manifest similarly, the path of healing necessarily looks a lot different.

People of color since the beginning of United States’ history have experienced genocide, colonization, slavery, Jim Crow, deportation, and racist policy after racist policy to this day.  The amount of stress this places POC in every day life is enormous and can lead to chronic illness.

And, I’m also asking the question, “Why do so many white people have autoimmune issues today?  And why does the number keep growing?”  (The occurrences of autoimmune disorders are larger than cancer now.)

I cannot answer this question alone.  This question will lead to conversation after conversation after conversation.

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Recently, my mom told me that thyroid issues go back to my great-great grandmother.  I wasn’t aware that thyroid issues had affected my great-grandmother’s mother.

That piece of information made me relax a little, and it connected me more deeply in a very small way to an ancestor I never knew.

I also took a breath and could name that my healing journey is much greater than me.  I’m connecting to the trauma of my ancestors that also lives in my body, that is connected to whiteness and a genuine mistrust of the body.

So, I’m learning to trust my body more and more every day.  I’m trusting nature’s rhythms, and letting myself rest.  I’m letting myself be creative, and letting my words just flow.  I’m confronting various ways I have internalized that “keeping with the status quo” encompassed my life’s purpose.  I’m taking deep breaths and asking my body what it needs. And I’m reaching out for other people to be on this journey with me.

I’m letting my healing journey reveal all that needs to be revealed.  And I’m learning to say YES to all of it.

Stay tuned for more, friends!

 

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5 Replies to “Whiteness & Autoimmunity”

  1. What a powerful post! I don’t even know where to begin to comment on! So I’ll start with this: yay, you blogged! 🙂 Even though I am obviously not white or Christian for that matter that doctor worship phenomena that we see today particularly affects the South Asian community. If you become a doctor, you havr made it. You are in. But not really. Also, on a more personal level, I had to learn through first hand experience that doctors are not gurus that can solve all that ails you. Human beings can learn a lot and we have, but we didn’t create ourselves. So to expect that someone with an M.D. after their name can cure you completely is something we all have to keep in mind. Keep sharing your stories! 🙂

    Liked by 1 person

    1. Thanks Rafia! I had a wonderful Indian cardiologist in high school 🙂 He was kind and surprised to see a 14 year old in pediatric cardiology! He was one of my first doctors at the beginning of my health journey; and he was absolutely right that I didn’t have a heart issue! Labels like M.D. sure are powerful though.

      Like

  2. Wow, Alyssa. This is profoundly and sincerely honest self–reflection. Hearing about racial awareness from POC has been educational but hearing about it from your position is healing. Progress seems hopeless when white voices back out of the conversation. So, thank you for sharing your perspective on this in your story. Hopefully, I can keep up a bit more during my Peace Corps service than I did from Indonesia. Your writing is excellent.

    Liked by 1 person

      1. Funny you ask. I was supposed to travel there today. That’s why I had spare time to really sit & read your recent post (It was a great distraction to trying to not lose my mind waiting.) Some of my medical clearance lab work had to be redone but didn’t come back in time so it looks like I’m going back in the mix. Liberia is on the table now so I’ve got lots of praying to do. Anyway, keep writing!

        Like

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