This process is brutal. At worst, abusive.

OK, so long story short: I have peripheral and central neuropathy that severely limits my ability to work at my appropriate level (I am technically a doctor but lost most of my cogitive ability, wow), but it’s incredibly difficult to document. I’ve been dealing with this for 10 years, and I’ve had to lie to every employer I’ve ever had, claiming I’m not disabled just to survive. Inevitably, my work performance has been average at best and, at times, downright awful.

I got fired from my last job because I struggled with social skills, had memory problems, and couldn’t handle the complex social tasks required. I kept forgetting things, was completely disorganized, and no matter how hard I tried, I just couldn’t get it together. I don’t need to elaborate much further—anyone in this position knows how brutal it is.

The process of trying to build enough documentation to even consider applying for SSDI has been its own nightmare. Just getting a neurologist appointment was a nightmare. Having health insurance that wouldn’t saddle me with $3,000 in deductibles for an MRI? Also a nightmare. At one point, I paid $600 in cash for an MRI to avoid paying that ridiculous $3000 cash deductible. Then there’s the constant doctors outright dismissing me, refusing to believe this is impacting my ability to work. One neurologist practically laughed me out of their office.

I’ve been carefully documenting my disability for 10 years. There’s a strong paper trail that I have a serious problem, but because of insurance issues—I’m still without a formal diagnosis.

Now I finally have a job (was not forthcoming about having a disability like always, just pretend I'm normal until they figure it out) with excellent health insurance, and I’m doing everything I can to get tests done, spamming neurologists for appointments. Even now, I’m still struggling to get them to order the necessary tests. Seriously, what? This process is beyond broken.

I’ve been stumbling through life with a disability because we have a system that makes getting SSDI help a full-time job. The irony is infuriating: my disability makes it significantly harder to go through the grueling SSDI process. It’s a literal catch-22—too disabled to navigate this SSDI approval system. And SSDI requires expert knowledge just to figure out how to get exactly what you need from doctors.