Tag Archives: ankylosing spondylitis

To the Social Security Administration About Denying My Claim for Disability Benefits

When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.

The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.

Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:

Continue reading To the Social Security Administration About Denying My Claim for Disability Benefits

Advertisements

Healthcare Is a Privilege. It Should Be An Inalienable Right.

I grew up privileged – white, yes – but also without ever considering what life would look like if my mother’s job did not provide her and her family with healthcare.

When I had walking pneumonia in fifth grade and was in bed for three weeks, I never considered what it would mean if my mother had to choose what to do or where to seek help if we didn’t have insurance.

When I was on birth control pills in high school, the drug co-pays were predictable. I didn’t fear my medication would suddenly become cost-prohibitive.

When I broke my nose, I never once considered that some people couldn’t go to the emergency room because they didn’t have insurance.

When I was in college I tore my ACL and later broke my hand playing college soccer. My bills were covered. I didn’t know other students didn’t have the healthcare I accessed.

I believed healthcare was something everyone had. If someone got sick or injured, s/he went to the doctor, paid the copay, then went to the pharmacy, paid the copay, etc etc.

I was blindly privileged. Continue reading Healthcare Is a Privilege. It Should Be An Inalienable Right.

My Walk to Cure Arthritis

I still remember my first time. I showed up curious, yet expecting to be bored. After doing cancer walks and fundraisers for everyone else, this was just another event for people with some horrible condition. I didn’t really take it seriously – after all, arthritis was for old people, not me.  This walk felt like something else to fill up space on my calendar. I could be doing…something else.

It was May 18th, 2013, and I was standing in front of the California State Capitol building at 8:30am. A month earlier I had been diagnosed with Ankylosing Spondylitis. It was “California-HOT.” People were gathered around without much energy – people I didn’t know, until a few friends showed up and held me upright while I wondered for the last time what I was actually doing there. I still didn’t want to accept I actually had arthritis.

935348_579433042076719_1780496394_n (1)
With Suzy, 2013 Arthritis Walk

I had raised over $2,000 for this walk. Raising the money was a way to share my story after the shock of hearing the words, “You have ankylosing spondylitis.”

It wasn’t about the money. It was about screaming at the top of my lungs to be heard after my world fell apart. It was about what I could control. While I couldn’t control this new diagnosis, I could make sure everyone in my life knew about it.

It wasn’t about the money. It was about people seeing my world fall apart, and I wanted my friends to glue me back together and erase the scars. Continue reading My Walk to Cure Arthritis

#Spondylitis Awareness Month

received_10156921444425347.jpeg
Image by Rich Beckermeyer Makeup by Alex Cassie

On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.

I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.

We do not choose to be strong. We become strong when we choose to survive.

April is Spondylitis Awareness Month. Learn about Ankylosing Spondylitis by watching this video created by the Spondylitis Association of America.  Then share it.