Category Archives: Invisible disease

To the stranger who told me I’m not disabled

Most of the time, when people ask for help, they really need it.

Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis
Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis. Left to right: Cyd, Mel, Charis, Denice, Lori

And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.

What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive.

It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.”

I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did).

My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment.  It was very sad and all I could do was continue repeating that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.

Those of us struggling to live with our chronic diagnoses are so often put into positions where we are challenged for our disabilities and forced to prove how sick we are. How degrading.
Continue reading To the stranger who told me I’m not disabled

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Pain is my fishbowl

Many of us are aware of the U.S. Marine Corps tagline, “Pain is just weakness leaving the body.” There’s also a similar, often-referenced quote by Lance Armstrong:

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.

By these definitions, my body is a tomb of never-ending weakness and I’m in a perpetual state of temporary pain (and in my case it doesn’t matter if I keep fighting or quit, the pain is still right here with me). Don’t believe everything you think, it was created by someone else’s perspective first.

When people freak out about bruises or scrapes on my body I have never understood the reason. What’s the big deal? Only in these aesthetic instances can I spout the “pain is temporary” mantra and people will understand that I’m just good at sucking it up, so to speak, and they leave it at that.  Most people do not understand that there is deeper, unseen pain that can last forever in our temporary bodies.

©2015, Glenn Jones/Ikona Photography H/MUA Ashley Caudron
©2015, Glenn Jones/Ikona Photography
H/MUA Ashley Caudron

Continue reading Pain is my fishbowl

An open letter to healthy people from a former healthy person


Dear healthy people,

Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic immune-mediated inflammatory joint disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)

Continue reading An open letter to healthy people from a former healthy person