When I decided to stray from my comfort zone and filed an SSDI claim this spring, I knew it would be an uphill battle. Approval rates are low, particularly for those of us who are decades away from a traditional retirement age, and the application and appeals processes can be difficult and even dehumanizing. While a minority of applicants are approved on the first try, many more are rejected, some with conditions as serious as stage-four cancer, paralysis, or double amputation.
A percentage of those denials are due to errors the applicant can easily correct. If you file for SSDI but lack the requisite work credits, for example, you might resubmit for SSI (assuming you meet the other eligibility requirements) and be approved. Other times it’s a matter of supplying missing medical records. It’s possible to be turned down repeatedly, in which case a judge might determine the fate of your claim following a court hearing.
During the 18 months in 2016-2017 when my Crohn’s was at its worst, I never considered filing for disability. I’d lived with severe GI disease for decades and never worked a day in my life without it, and my job didn’t offer short-term disability coverage that could tide me over until my next remission. Collecting SSDI for IBD is rare because it’s typically debilitating but not fully disabling, the same as my arthritis that’s caused by IBD.
As a neurodegenerative disease, Parkinson’s is different: there’s no prospect of remission and the assumption with early-onset PD is that my condition will worsen, subtly or otherwise, each year. What are my options, realistically, as a worker with a high school education? If the circumstances were slightly different — if I was diagnosed earlier, or expected to be at the top of my game cognitively throughout a lengthy physical decline — career retraining would make sense. Putting my eggs in that basket now would be foolish.
Even if I avoid dementia, as most YOPD patients do, Crankenstein and I anticipate some amount of cognitive decline and believe it’s already evident in parts of my speech and executive function. I’d planned to earn a college degree using a tuition reimbursement benefit offered by her employer, and I’d still like to do that once we’re eligible, but whether it will be feasible now is anyone’s guess. At this stage it’s something I’d pursue for fun, not as a means of career reinvention.
When a lawyer relative who has worked in healthcare advocacy and disability rights learned of my diagnosis, she suggested filing for disability right away. To me it seemed premature, and too much like capitulation. But as I approached a year on carbidopa/levodopa, the reality of my situation was unavoidable: even on medication, and with the strenuous exercise recommended as the only way to potentially slow disease progression, I have a few permanent physical impairments.
Depressingly, others had come to the same conclusion, including Crankenstein and some physician and lawyer friends. My neurologist and rheumatologist were also supportive, the latter making the same point as Crankenstein: PD itself is disabling, and when you factor in the burdens created by my j-pouch and other conditions, finding appropriate employment becomes a fairly absurd proposition.
I couldn’t disagree, but I would’ve rather removed my own kidney with a butter knife than submit that SSDI application. After everything I’ve dealt with medically for the last 38 years, the prospect of someone casting a critical eye on my history and looking for reasons to deny my claim felt outrageous. My reputation as a worker who could always be counted on to show up and do the job right, even when I probably should’ve been in the hospital, was a source of personal pride.
Admitting to myself — and worst of all, to others — that I’d reached my limit was enough of a blow already. Knowing I’d inevitably be told to pound sand by the same government I’d diligently paid, along with my employers, for SSDI coverage throughout my working life made it worse. But I’ve also been there before, in a variety of settings, starting with my dad and Felix giving me guff any time I complained about stomach pain in the first few years after my surgeries. “Wuss, crybaby, faker” was Felix’s preferred taunt, while my dad accused me of “living in the past.”
In reality, I was the only one living in the present. I wasn’t a crybaby, wuss or faker: I was adapting to life with a new j-pouch and was plagued by Crohn’s symptoms for the rest of my childhood while my parents pretended everything was fine. This pattern repeated itself in fifth grade, when I started complaining about sore throats. My mom would take me to the pediatrician, who’d say “It’s a virus. If it doesn’t get any better, call me in 48 hours.”
By sixth grade I was still complaining and my parents were fed up — with me, not the doctor. My mom was pregnant again and had as little time for my throat as she did for IBD, so she devised a plan that would teach me a lesson. “We’re going to an ENT,” she announced, as if it were a threat. “And when he says nothing’s wrong with you, you’re never going to complain about a sore throat again.”
Naturally, those were famous last words, ones she’s still apologetic about today, because the ENT had barely glanced at my throat before he turned to face her. “Who’s your pediatrician?” he asked. When she answered, he suggested finding someone else. My tonsils were inflamed and pitted from repeated infections, he explained, and so swollen they were nearly touching, which was obstructing my airway. They needed to be removed right away.
The recovery process from that simple procedure was complicated by how rapidly I became dehydrated and lost weight (as a result of my screwy intestines) when swallowing was painful. Once I was discharged from the hospital, it was a battle to keep from being sent back. Maddeningly, there’s no moral to the story; my parents were livid at the pediatrician and found a new one, but learned nothing from it. Other tone-deaf incidents were to follow, including my father dragging me to a Bob Dole rally in 1996 when I was dangerously dehydrated.
My former partner had similar difficulties understanding my health issues, which ultimately hurt a lot more than the laziness and immaturity I’d come to expect from my parents. (It took 25 years longer than it should’ve, but they’ve changed their ways since then.) That’s why Crankenstein was a breath of fresh air: she knew how the IBD, joint and skin issues fit together, and was confident we could get it all under control with the right doctors and immunosuppressants. Years later, she brought the same approach to cracking the YOPD mystery.
It was Crankenstein who put it most bluntly when encouraging me to file for disability: “Please don’t take this the wrong way, but if you aren’t disabled I don’t know who is.” The DDS agent who evaluated my claim disagreed and issued a denial months ahead of schedule, before I’d called to verify all their record requests were granted. The form letter I was sent included an inventory of what they’d received. Missing were many documents that should’ve been in their possession, including a few I’d sent myself (with proof of receipt) and — drumroll, please — my neurology records.
Disheartened, I reconsidered my plan to handle the first appeal myself. My records are longer than War and Peace and a doctor first noted my tremor in passing in 2014. How would I know what is and isn’t relevant? I called a local lawyer with a good reputation and asked if they believed my case had any merit. Their office will handle the appeal and if they’re successful, they collect a fee from any back pay awarded. It’s federally capped at 25% of back pay, up to $7,200, with the latter figure set for a small hike later this year.
They cautioned that due to my age this could well end up at the hearing stage, which would be a few steps down the line and likely conducted over the phone. The appeals process can involve months or years of waiting, and though the prognosis for a condition like Parkinson’s is a foregone conclusion, the judge could figuratively call me a ‘wuss, crybaby, faker’ and tell me to take a hike.* If I could handle it as a kid, I can handle it now, but it would hurt a bit more as an adult since I’m on the hook for my own medical bills now. That’s one of the biggest reasons I filed — to help cover the costs of my current and future care.
* What about people with less time to spare, who lack adequate savings or a working spouse? In a country as technologically advanced as America, I think we deserve a better-organized and more transparent system than this. There shouldn’t be any surprises about what records were and weren’t obtained, and the claim-processing progress bar shouldn’t stall at 50% for weeks or months and jump to 100% overnight.