What I've Learned About Accepting My Chronic Illness and Disability
I’ve always felt pushed to live as “normal” as possible. Whether it be the latent forces of our ableist society, advice from friends or family, or my own internal dialogue, focusing on acceptance and embracing life with chronic illness and disability was never something I considered much.
Becoming sick and subsequently disabled at age 23, a time when most of us are still wading through the new challenges of adulthood and seeking comfortability within our own skin, I had no idea how to integrate my new identity as a “sick chick.”
Now officially a college drop-out and unable to work, what was I to do? Twelve years ago, support for those who were chronically ill and disabled was scarce. My peer group was comprised of healthy, able people who had never faced complex health challenges, let alone a serious diagnosis like reflex sympathetic dystrophy (RSD), also known as CRPS.
Well-intentioned friends and family encouraged me to be as normal as possible, with a heavy emphasis of hiding or concealing both the physical and emotional challenges I was experiencing. Their advice was born out of concern that I would be treated poorly, differently, or even discriminated against if people knew about my health challenges.
Heeding their advice, I made a tremendous, daily effort to conceal the physical and emotional effects of RSD/CRPS. I hid the edema and color changes with long clothing. Special makeup tips were garnered to hide the effects of pain-induced insomnia. Assistive devices were used as sparingly as possible. I pushed myself physically sometimes to the point of vomiting from the pain.
Any anxiety, sadness or despair I was experiencing was masked by a capacious grin and over-the-top positive attitude.
Outwardly, I was winning. While the world saw a young woman who had adjusted well to her diagnosis, internally raged a constant struggle of wanting to eviscerate RSD/CRPS from my life.
A part of me firmly believed if I was the perfect, compliant patient and pushed myself physically and emotionally on a daily basis I could make this all disappear on my own volition.
Acceptance was necessary, but in my self-made world of repudiation, acceptance equaled defeat. And that was one equation that would take years to solve.
When a good friend of mine wanted to set me up with her brother-in-law, I met her idea with a resounding refusal. It had been 11 months since my RSD/CRPS diagnosis, and I had finally resolved to the fact that I would die alone, partnerless. A year’s worth of grueling medication trials, physical therapy, and interventional treatments had taken a toll on me, and the facade of everything being OK was beginning to crack. My ability to keep up appearances during the now dwindling encounters with family and friends was ebbing. How could I even think about dating?
I was suspended in a state of pseudo-acceptance. I certainly hadn’t accepted my diagnosis, nor the fact that I was disabled. What I had accepted was the myth that I could not live a fulfilling life with RSD/CRPS.
As the world continued on seemingly without me, thoughts of wanting to check out drifted in and out of my consciousness. It became incredibly painful to watch my friends do all the things I was supposed to do: graduate from college, travel the world, get their dream job, and meet their life partners.
Despite the incessant rejection of my friend’s desire to set me up with her brother-in-law, she accomplished her goal through a careful plan of trickery which I would later come to praise her for.
Under the ruse of wanting to have a girl’s poker night at her home, I mustered up enough will to attend. Not wanting to expend energy on some of the usual exercises in concealing the physical effects of my illness, I threw on an old hoodie, tied my wet hair back in a bun, and abstained from my usual spackle makeup job to cover up my insomnia-induced under-eye circles. Coupled with the velcro flip flops I was now begrudgingly wearing because of swelling, I was the antithesis of cute.
When I showed up, it was my friend, her husband, and the man she had been trying for months to set me up with. As I came in, I shot her an epic stare befitting the swindler she was and began to prepare myself for an awkward evening.
To my surprise, we hit it off. He himself had faced health and disability challenges as a child and seemed to understand firsthand what I was going through. Despite my pessimistic and dismissive position, I reluctantly accepted an invite for our first date.
On the day of our first date, I frantically spoke to several friends on what to do with my shoe situation. We were going to a trendy restaurant, and ugly flip flops would not be copacetic. I was so embarrassed — not only was I limping badly and would need help navigating stairs, I was dressed nicely but had to wear these horrific flip flops. As I contemplated cancelling, friends encouraged me to force my feet into a pair of shoes and deal with it. But it was my younger sister and roommate at the time who was the voice of reason. “Noelle, your foot is three times it’s normal size. It’s these flip flips or barefoot. If he’s embarrassed of that then he’s not the guy for you.”
He turned out to be the guy for me, and we were married four years later. Through my relationship with my husband, I was able to recognize that if he could accept me, chronic illness, disability and all, others could too. Maybe one day even I would.
The distress I experienced over which shoes to wear on our first date was analogous to many other areas in my life. It was never really about the shoes but more about me not accepting my chronic illness. It took many more experiences over several years to quell my insecurities and foster an environment of acceptance.
I’ve spent years working on accepting living with chronic illness and disability. It’s taken real work and patience by myself and those closes to me.
Acceptance is fluid and a lifelong process. It is not static nor fixed. Acceptance does not require you to submit to your illness or dismiss your sadness, grief or fears. In fact, acceptance is acknowledgement and the very permission to experience all those things without shame or judgment, allowing you to embrace all parts of yourself, even the ones you sometimes wish were’t there.
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Thinkstock photo by Eyecandy Images