Let me tell you about getting disability. It’s taken me three years, two denials, one lawyer, and an enormous amount of help from family and friends to get to the point where the disability judge is EVENTUALLY (in maybe 6 mos, maybe 2 more years, who knows!?! maniacal laughter) going to hear my case.
Meanwhile, my hips have daily subluxations. My arms pop right out of my shoulders. I have so much Botox in my horrifically knotted up back and shoulders (the extensive pain is the result of trying to keep my arms within my shoulders) that I am sick for a week after injections, which removes about 40% of the pain and then only last 2 months.
Superficial complaint: I now have weird droopy eyelids because now I have a ton of Botox in my forehead to prevent chronic migraines. I am going to have to have surgical ablations for my superficial nerves in the back of my head. When I type now, my fingers dislocate. (Thankfully I’m typing this with my sturdier thumbs!) I’ve ripped the connective tissue in the soles of both of my feet and been unable to walk without support for weeks and months at a time. My ankles roll over when I walk without the biggest orthotics you’ve ever seen, that don’t even fit in normal shoes. My joints pop and crack so much it startles people. I’m in pain in my joints, muscles, and my chronic headaches kick in when I go to the store or, Goddesses forbid, the mall. Want to go see a movie with me? I love the movies! Let’s go, wait, though: I’d better make sure I’m doing nothing else that day. Want to go to tea? Awesome! I love you, too, and I really look forward to seeing you. But that’s my event (besides the grocery store) of the day. Need me to go to two stores? Expect a longer-than usual nap. And I nap EVERY. Single. Day, otherwise I cannot function. It feels like I have the flu every single day.
Living this way is really, really, really frightening. Living with income insecurity is absolutely terrifying. Waiting for someone, probably in hale-health, to render a verdict on whether or not I am too disabled to work a regular job is demoralizing and sad.
I’d love to work like I used to. I used to teach 15 yoga classes a week! I don’t think many people know that Ehlers Danlos has taken away my ability to dance without severe pain, goof off, ski, practice even the most basic of yoga poses without severe musculoskeletal pain. It has taken my ability to be a friend who shows up to all your events, nevermind me being able to help and arrive at your bedside when you’re sick. It has taken my ability to stay awake in a meeting longer than 30 minutes. It has taken away my ability to hold long conversations because my head hurts and my brain fogs in.
Do I want to work? Yes. Not because I want the money (although, that would be nice!) but because of what that symbolizes for people. I would be a human out in the world freely doing stuff, not what I am now, a person who carefully manages my pain and muscular engagement and headaches and brain fog and energetic expenditures.
This week a lovely human who I think is a badass with her own chronic illness said I was her hero for being honest about this fucking chronic illness life.
Maybe I haven’t been honest enough, because there are assholes (see photo of the president) who think we are faking it. There are those who have claimed TO ME AND THOSE WHO KNOW ME that I am sitting at home collecting disability and being lazy. I wish that were the case, because neither is happening, and it would be nice to be lazy, instead of managing my symptoms and doctor visits and the household I live in.
I imagine a couple folks out there are running the longest, most complicated, most depressing and time-consuming con on the US government. Con artists have always existed.
I’m here to tell you that if they are running a con, it is the most demoralizing, stressful, humiliating, and least-monetarily-rewarding con known to me.
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The Trump Administration has proposed a new rule to make it harder for people receiving disability benefits to keep them. While the Trump Administration claims that this new rule will result in $2 Billion in savings, it turns out that the cost of the extra oversight will virtually wipe away any financial benefit to taxpayers. It will also add layers of red tape to the process of acquiring and maintaining disability benefits, which is hard enough to navigate as it is.
Between now and January 30th, the Social Security Administration will be collecting public comments about the proposed new rule. We strongly encourage you to make your voice heard.
Read more about the proposed rule
Read the public notice of the proposed rule
Submit a comment with the Social Security Administration by clicking here and putting SSA-2018-0026 in the search box.
Read an example comment submitted by Outside Voice’s Founder, Jennifer Rosen Heinz