Category Archives: SSDI

#sickbody, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Invisible disease, Patient Advocacy, sickness, spondyloarthritis, SSDI

Becoming Disabled Is the Apocalypse

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Becoming disabled is indescribable, so of course here I am trying to write about it.

I did not simply become disabled and accept it with the snap of the fingers: “Aha, so that explains everything! I’m disabled!”

Let me make the clear distinction between becoming vs being disabled. Becoming disabled is a learning process. Being disabled is what happens after the shock has subsided and one has accepted disability as part of his or her identity. Plenty of people have never “become disabled” because they’ve always been disabled – they have never been any other way. The difference between becoming disabled and being disabled is as simple as broken versus whole. When we finally reach the acceptance stage, we are once again whole, having accepted that disability is part of us now.

There is no timeline to follow after a sudden and shocking diagnosis – other than scheduled doctor appointments, and perhaps the sudden tendency to plan for the unexpected worst so that if things improve there’s a reason to celebrate. Rather than having a reliable and predictable five-year plan, the sidewalk paves itself with each step you take.

It’s definitely not a walk in the park.  Becoming disabled is more like walking through the apocalypse. Think broken pavement. Zombies. Car alarms. Birds, big black birds. And whatever else you can think of that you wouldn’t want to round the corner and run into. Clowns. Spiders. Snakes. Balloons. Door to door salespeople. Fear. That’s what I’m talking about. Fear. It’s what threatens to overtake each tentative step forward into the unknown, unpredictable new body you now inhabit. Fear is a powerful substance.
Continue reading Becoming Disabled Is the Apocalypse →

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Accessing Welfare Is Easy

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Just fill out the forms, submit them, and wait for the phone to ring, right?

Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.

Not.

I got so excited when I thought about the idea of living on an average of SSDI $1,022.29 per month, or SSI $561.60 per month. Actually, less than that, since “The amount you receive each month will be based on your average lifetime earnings before your disability began. It is not based on how severe your disability is or how much income you have.”

Not. Could you do it?

Why have I spent the last two years using every ounce of energy I have to try to earn a living?  Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.

That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip.  I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with.   Continue reading Accessing Welfare Is Easy →

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The Affordable Care Act is Not Affordable for Me

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My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient.  In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick.  Only $251 is spent per capita on public health measures aimed at proactively preventing illness.

The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare.

Privilege is a dangerous word. I’m privileged? to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me →

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To the stranger who told me I’m not disabled

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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 →