Why Anonymous

I am disabled. I’m on disability.

Those two things don’t always go together.

I struggled for a decade after I contracted Lyme Disease. I felt like death warmed over, every day. I spent all my free time at doctors’ offices. The doctors told me that my labs were normal, and I “looked good,”¹ so I must be fine.

Occasionally — like once every couple of years — a doctor helped me make incremental progress on something. But it was clear to me that my body was on borrowed time. I would become unable to support myself long before I reached retirement age.

Every few years I tried to get onto disability. No dice. “I don’t really believe in Chronic Lyme,” or, “I think you have Chronic Fatigue Syndrome, but there are no known labs or treatment.”² Either the doctor didn’t believe I was sick, or the doctor didn’t think it was worth it to apply, because I’d never be approved.

One doctor said, during our first appointment, “Have you applied to Social Security Disability yet? Because you really need to do that.” I was so grateful that he seemed to be supportive. But during the second appointment, everything switched. “Oh no — I don’t fill out disability paperwork. I never fill out disability paperwork. It’s not worth it to me.” When I pushed back — mildly — and asked exactly how one was supposed to eat if one were, according to him, too disabled to work, but unable to get supportive paperwork, he became churlish, and then filled his doctor’s notes with inaccurate comments about my weight and dietary habits.

I mention this because people say things to patients a lot. Like, “Why didn’t you stand up for yourself?” But that’s precisely why we’re there. Because we can’t stand. Or we can’t walk right. Or we can’t….think, anymore. That’s why we’re there.

Boundaries take energy. Pushing back takes energy. Dealing with a major power imbalance — weak, vulnerable patient vs. respected doctor — takes energy.

Asking patients to fix the problem while sick is like asking people with broken legs to walk to the top of a mountain to get treatment.

My favorite experience with illogic around disability benefits was when I had excruciating endometriosis pain. The first gynecologist I saw recommended surgery, but wouldn’t help me get short-term disability just until my surgery date with him. “I can’t do that; how do I know you’re not faking it?”

He was willing to cut me open based on his diagnosis. But not to sign a piece of paper to save me a little bit of suffering.

I went with another surgeon.

My time of teetering on the brink and cosplaying as a healthy person ran out in 2018. My surgery pushed my post-infectious ME/CFS into a severe state and I suddenly became mostly bed-bound.

I had to stop working. I literally couldn’t get out of bed except to go to the bathroom. Mental exertion left me depleted for hours or even days. But I kept getting rejected for disability. First I was rejected for short-term disability, then I was rejected for long-term disability, and finally I was rejected for Social Security Disability.

The stress was incredible. I was so ill I couldn’t leave my bed, but I kept having to spend all of my energy calling insurance companies, finding a law firm to help me appeal my case, researching specialists, and trying to figure out what hoops to jump through.

What were the magic words, that would release me from this cruel Catch-22? Where could I find exactly the right doctor, to write exactly those right words, so that I could just concentrate on — you know — being really, really sick?

It was horrible. Only the fact that, in my previous life, I’d been a super-type-A go-getter helped me limp along in this quest. The ruins of my former abilities got me through. But only just.

My local doctors were terrible. I explained to one that mental work left me severely fatigued. So he sent me to take a weight-lifting test. The entire year was like that.

Finally, I flew out of state. I went to an MECFS specialty clinic. They ordered about 50 different labs for me. Finally I had abnormal labs. Because they knew what to look for.

I went to see a neuropsychologist. When I walked into her office I was fine. After an hour of memory tests I was unsteady. After a day of memory tests I could barely walk. It was like a light turned on. She was able to show what had been hidden, and create the circumstances where my mental fatigue would be on display. Her testimony was key to getting on disability.

But she did more than help me and show compassion. She also helped me understand the stakes.

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“Have they followed you yet?” she said.

She explained the dirty tricks that disability companies could use. They would send private investigators to follow patients. They would call up providers, and then perjure themselves in court to say, “That’s not what she told me over the phone.” For that reason, my provider had a strict policy to communicate in writing only.

That’s when I understood.

Things weren’t hard for me because I was just dealing with faceless, difficult, exacting bureaucrats.

Things were hard for me, because I was dealing with the Mafia.

So I have started this blog. Anonymously.

Because I want to write. I want to share my experiences. I want to use what limited life force I have left to do something meaningful. But I’m afraid. Petrified, really. My disability payments keep me afloat. But one wrong move, one wrong word, and everything I do can be twisted and used against me to deny my the benefits I paid into.

So I do what people do, when they’ve pissed off the Mafia.

I put myself in witness protection.

1. “Fuckable” I think is what they helpfully meant

2. This isn’t quite true. Once I went to the Center for Complex Diseases, they were able to find abnormal labs and suggest some targeted medicines and supplements to help me. If I’d been referred to them years earlier, I might have been able to keep working. Instead I was told there was nothing to be done.