Ableism, Chronic Illness and Being Invisible – Guest Post by Trista Ann Marie Eazell

Ableism, Chronic Illness and Being Invisible – Guest Post by Trista Ann Marie Eazell September 30, 2019

The following is a guest piece by Trista Ann Marie Eazell.

 

I do not remember a time where my body wasn’t screaming in pain.

At eleven years old I – a child who had never once complained of pain before – began crying because my body hurt so bad.

My mother took me to multiple doctors, but they didn’t believe me and told her I was making things up. That the pain in my body wasn’t real.

My mother refused to listen, and thousands of dollars were spent on me being poked, prodded, attempting every treatment we could get our hands-on.

Eventually, I was diagnosed with fibromyalgia, a disease of widespread chronic pain that has mystified the medical world for decades.

My parents are of the born-again persuasion of Christianity and many Christians who heard of my disease would speak words of “prophecy” that I would be “healed in the name of Jesus,” and at first I believed them.

I believed that if I had enough faith and enough people prayed, I would be free from the constant and unending pain.

But the healing never came.

Fibromyalgia is considered an incurable disease, only a few have recovered fully, and even then the reasons why are unknown.

Because of my fibromyalgia, I didn’t have the energy other kids my age did. I couldn’t play sports, I ate weird healthy food, and was constantly getting sick. I had friends, but I felt isolated.

At 22, I was diagnosed with another incurable disease: endometriosis, a disease that grows skin cells that shed throughout your body creating excruciating pain and leave scar tissue behind.

Through the painful battles my body had to fight daily, I also found myself being discriminated against in the workplace for not having as much energy as my coworkers, for not smiling as much, for having a hard time moving heavy things, and for needing to call in sick occasionally.

When I explain my illnesses to people I often get “well you don’t look sick!” or “you’re too young to be tired, have kids than talk to me.”

It is assumed because I am small and thin, I must be healthy and comfortable in my body.

The reality is, I am so small because of my illnesses, struggling with the wellness diet culture, and I am not comfortable in my body at all.

Living in a chronically ill and chronically painful body is like living in a house that is closing in around you and in need of constant repair.

I have experienced only a handful of pleasurable embodied experiences, most of the time I am just trying to distract myself from the pain.

I often feel that my struggles are invisible to the world around me, and when I do not live up to the standard expected of someone who visibly looks healthy, I am looked down upon. I have to go to four different doctors regularly and am on about 10 medications. I have been yelled at by roommates who didn’t understand why I wasn’t as active as them in cleaning the house or why I seemed so forgetful.

I and others with both invisible and visible illness/disability have learned to be tough and to deal with the fact that people will be insensitive and prejudice towards us, refuse to listen to us, and refuse to ask questions about disability.

I am a part of a lot of social justice conversations and consistently ableism has been the topic folks are least comfortable talking about, least willing to do the work to be empathetic to our plight and forget to list us among the marginalized groups.

When the Holocaust is discussed it’s never brought up that the first hundreds of thousands of victims were disabled and sick people.

When we learn about U.S. History we do not hear about Buck V. Bell where “imbeciles” (i.e. disabled and chronically ill folk) were forced to be sterilized, and how in many states those with visible diseases weren’t legally allowed to be seen in public.

This is an uncomfortable conversation to have because people still are not ready to face the fact that humans are naturally prone to fear what they do not understand.

Those with chronic illness and chronic pain often represent the fear most people have of facing their invisible emotional pain: it’s easier to dismiss those with invisible pain than to acknowledge that everyone has invisible demons. Those with visible disabilities often represent the fear people have of the “other”, it is easier to vilify people with visible disabilities than to do the hard work of understanding their needs, of making space for them and being patient enough to let their voices be heard.

In religion, people with disabilities and illnesses were often thought to be “unclean”, “sinful”, and even “demon-possessed”.

Often churches and other religions will look at disability and illness as something spiritual that needs to be fixed by God or a charity case to earn heavenly rewards from. The questions that those with disability and illness ask about God are hard. Is God all-powerful? Does God care about my pain? Is God there? And at these questions the church stares blankly at and then tries to meet with earnest but helpless anecdotes. The voices and questions of the disabled and ill are silenced in the spiritual places they look for answers in.

I cannot tell you what the remedy is, but I do not that all who are healthy and able-bodied do have ableism that needs to be worked through. Do research, listen to the voices of the disabled and ill, invite them to sit at the table beside you, ask them what they want and need, and be humble when someone points out ways you are being ableist.

Trista is a pastoral intern at New Abbey North Hollywood, a graduate student at Fuller Theological Seminary, a writer, a poet, and desires to help bring healing. For more of Trista, follow her on Instagram.

 

For more of Sheri Faye Rosendahl’s work, go to www.SheriFayeRosendahl.com, check out her book Not Your White Jesus, or follow her on Facebook, Twitter, or Instagram.

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  • John A. D’Elia

    Thank you so much for sharing your story.

  • Leighton Cooper

    The books I really like are Tarthang Tulku Time Space Knowledge The book is a serious of many different styles of visualizations, that have to do with describing biological and imaginative processes. Brotherhood or Church of Light. Their teachings and explanations match up into diagrams and they do teach some decent vocabulary that you can run into today’s University College Published books like Questia or Safari Books online. Because for me I need to use books to improve conversations that don’t exist on TV. Astrology (The only way to learn astrology the 1st volume is really good for getting you to contemplate personal words and how you define them. Like if you talk to me about joy. There exist’s within it describable sensefullness patience that can be explained and provides you with greater flexibiliby. Sorry I don’t converse much about my issues because I am anti-religious so I get stopped quickly. For studies on Denial you have Original Cause the unseen role of Denial by CeAnne de Rohan, starting with the 2nd volume. The first I found to be Unicorn Fluff, but from the second one on. These books describe interesting conversations that can help you extend the helper words you get in BS Evangelical and Baptist cults because they can’t understand themselves (and have no interest in putting in any work to discover how their helper words aren’t creating sensefullness. Which is the conversation I give and refusing to talk about sinfullness (WHICH i DON’T BUY INTO THE WHOLE EVERYONE IS SINFUL USELESS DOCTRINE)!!!

  • John Gills

    You have spoken for my wife. Persevere.

  • Tim

    Thank you for this post. I have ulcerative colitis and have good days and bad. The problem is that when it’s a ‘good day’, I don’t look ‘sick’ to people I meet, especially those who are meeting me for the first time. I find that this can create problems with the perception of the severity of my disease. While there are chronic illnesses out there that are more serious and life-threatening than colitis, I have had people question my need for things like FMLA, a schedule change, and just yesterday I got some nasty looks at the pharmacy when I told them I needed the hi-dose flu shot due to my immune-suppressant drugs that I am on. It’s as if they think I’m trying to swipe a hi-dose vaccine (are there limited amounts to go around?) out of the arm of someone who may need it more than I do…especially since I am not yet over the age of 65.

    As far as questions (or flat out anger) for God, I’ve been traveling that murky road for the last year, as my illness, coupled with cancer in my wife and her mother, and the loss of my brother-in-law and father-in-law within a 24 hour span in June, took some of the spiritual wind out of my sails. I did find a passage that answers some of my question as to the “why”:

    “…so that you may be children of your Father in heaven; for he makes his sun rise on the evil and on the good, and sends rain on the righteous and on the unrighteous.” (Matt. 5:45, NRSV)

  • AskCarter

    You are not alone! I have been bed- bound with systemic sclerosis for over ten years, a disabling condition that interrupted my career – my vocation, to use the vernacular of the culture – in pastoral ministry, where it was always reprehensible to me that a large percentage of loud, arrogant, but demonstrably very frightened, insecure and ultimately, faithless American Christians have abandoned the Gospels and the theology of Jesus in favor of a comforting, “God in their imgage” who shares their disdain and conditional love for [insert marginalized label here] His children and in order that they might avoid the instructions of Jesus to “do for the least of these” and “remove the planks from their own eyes” He has instead rewarded their hypocritical, public displays of piety and self-righteousness by promoting them to a co-equal position as “lawgivers” and “enforcers.”

    There is nothing noble, nothing sacred and above all, nothing “beautiful” about suffering, much less the unmitigated suffering of the citizens of a country that prides itself on its wealth and civility. I have recently been diagnosed with breast cancer, and this has forced me to leave my bed and spend considerably more time in the “real world” where I am now forced to confront – literally – people who have embraced this empty “prosperity,” “health and wealth” doctrine that has been designed to create a system where the poor and the sick are demonized so the would-be wealthy and hope-so-muchhealthy can justify their apathy and call their greed holy.