Category Archives: Advocacy

#sickbody, Advocacy, chronic disease, chronic pain, disability, Inequality, Invisible disease, Patient Advocacy, sickness, SSDI

Applying for Disability Has Dehumanized Me

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Applying for disability is a demeaning, humiliating, invasive process.

I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take six months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Most people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations, and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful. In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated, and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.

(here’s a link with some stuff that makes sense)

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“I made this shirt.” Image by Rich Beckermeyer; Makeup by Alex Cassie

As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single other thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.

My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in yesteryears. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so that others will believe me too.

The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health, and accomplish chores. Continue reading Applying for Disability Has Dehumanized Me →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, fashion, fashion show, health, Heroes, Invisible disease, modeling, Patient Advocacy, Role Models, sickness, spondyloarthritis, Survivor

Tomorrow I Am Famous

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For 60 seconds I will be famous. On the runway, the catwalk – whatever surface my heels will be wobbling on as I make my legs appear longer than they are and my heart less frantic than it will be. Few in the crowd of celebrities, photographers, stylists, and designers will know my name, but for 60 long seconds I will be the one everyone is looking at. It doesn’t matter to them who I am, and that’s ok. I’m there to sell clothes.

But I’ll be selling something else, too. I’ll be selling dreams and awareness for those living with incurable chronic diseases.

For the five hours before I take the first bold step on that plank runway I will be backstage interacting with dozens of people – models, makeup artists, hairstylists, designers, stylists, photographers, and producers. Many of these people will see me as another model who wants to make it big in fashion. I’ll be another face to paint, another head to sculpt, another frame to drape and dress. I don’t blame them. That’s why most models walk in big fashion shows – to make it big. But I’m not in this to be America’s Next Top Model.

I’m in this to share my story. I’m in this to bring fashion and sickness together in a powerful way that changes people’s perceptions and awareness of invisible illnesses.

Backstage while I’m getting hair and makeup done, there is plenty of time for conversation. Continue reading Tomorrow I Am Famous →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, disability, Gender, Healthcare, Invisible disease, Patient Advocacy, Relationships, Role Models, sickness, spondyloarthritis

The Doctor Who Renewed My Hope In Doctors

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It wasn’t always this way. I used to trust that doctors could, and would, cure me. They knew all the right answers, whether I needed medication, and which medications would fix me. Going to a medical establishment carried the promise of making me feel better within hours or days.

That was before I became ill with a chronic disease, Ankylosing Spondylitis. That was before I was diagnosed with Major Depressive Disorder, Anxiety, and PTSD.

Many believe, like I used to, that visiting a doctor means getting better. But doctors who treat permanent diseases have a tough job: they stare down diagnoses every day that they can’t eradicate. There’s a huge difference between curing a temporary malady and managing a lifelong disease. And to choose to be a doctor who treats patients with incurable diseases takes special courage – or a desire to make a considerable amount of money.

Doctors leave medical school with heads full of practical clinical terms: elevated T-cell count, HLA-B27 positive, elevated bilirubin, polyenthesopathy, erosion of the spine with bone calcification. But, unless they share our diseases, they do not know what it is like to be in our bodies; to feel our forever pain, our fatigue, our fears. They rely on us to paint a picture of what it actually feels like to have a high T-cell count and polyenthesopathy, but many of them forget to ask, and when they do, sometimes they don’t know why they need to know what the patient is actually feeling. If they’re smart, they try to help us manage our pain, fatigue, and fears by prescribing treatments based on what they see in lab, X-ray, and MRI results, with final decisions based on the symptoms we present. Continue reading The Doctor Who Renewed My Hope In Doctors →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Grief, health, Healthcare, Invisible disease, Patient Advocacy, Relationships, Role Models, sickness, spondyloarthritis

My Struggle With Three Simple Words

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How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I want to give get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate.

The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

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Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject.

Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move. Continue reading My Struggle With Three Simple Words →