An Anniversary: 5 Years of SSDI

In the ME/CFS community some people recognize and are impacted by the anniversary of when they became ill. Many had a sudden onset, and that day is etched in their minds. They might experience deep grief as that day comes around, or be proud of themselves for continuing to survive, or both. There is a large advocacy organization that often solicits these dates and encourages folks to use them in awareness campaigns.

I can’t do that. I don’t have an onset date (which excludes me from those campaigns). I can’t even tell anyone how long I’ve been sick, except to say, more than 20 years, or most of my adult life. I don’t know when I got sick, except to tell you that it was between 1990-2003. There were potential trigger events throughout that time period, and I started experiencing symptoms. 1990 was when I acquired mononucleosis from the Epstein Barr Virus (EBV), which has been reactivated in my body for many years. But it was 2003 when I started doggedly pursuing answers from medical professionals.

But today’s a date that means something to me: my five year anniversary of being approved for SSDI.

I never hear people talk about that kind of date. But it’s the day my world changed.

[Context note: I am an educated middle-aged white lady with a master’s degree who previously held a management position at an ivy league university. I have more privilege that most disabled folks who are on federal disability benefits in the US, and make more money. I have more cognitive capacity than many people with my severity of illness. My experience is only my experience, and not the experience of many.]

5 years ago today I found out I wouldn’t become unhoused. That I was no longer at risk of having to surrender my pets. That I could buy groceries and pay for my supplements. It’s the day I could finally start mapping out the financial realities, possibilities and limitations of my new life. It was the day I could start using my back pay to replace sheets, to purchase assistive devices. And the day when I had to implement a very careful savings plan, since I have almost no potential to come into money again in my life without advances in research.

January 20, 2019 is the day I stood in the kitchen on the phone with my dear friend E, sobbing, shaking, pacing, in total disbelief and confusion that the government believed me. That my inability to do so many things that brought me joy or purpose was affirmed. I was seen. It wasn’t in my head. It was true.

And I had succeeded on my initial application with no appeals. (Gratitude always for the miracle who was known online as Lily Silver, and her genius and generosity in creating howtogeton.wordpress.com. What is remembered lives.)

And it was a major mile marker on the road to seeing myself as disabled. As identifying as disabled. And a door opening into the extraordinary disability community.

I don’t mean extraordinary in an inspiration porn sort of way. No. I mean the absolute glory of generosity, encouragement, information exchange, creativity, problem solving, truth-telling, challenging, radicals who are now my teachers and friends.

Did I need approval of a government entity to find my place there? Absolutely not. And neither does anyone else. In fact, it’s a pretty terrible measure of whether someone is disabled. When the Social Security Administration is denying 70% of submitted applications, and tons of folks I know don’t mean the specific financial criteria to apply, folks on SSI or SSDI are a small fraction of the disabled population. It’s also true that many disabled folks can and do work and have successful careers, with and without accommodations.

But in my case, that pronouncement was a catalyst.

It took me a while to integrate this new coronation. It can rearrange a brain and a heart and an identity. And then I had to feel my way around my new financial reality.

I’m not well off; I make less than my area’s calculated living wage. But it was information, stability, something to work with that wasn’t just terror of falling into an abyss with no net.

Because I’m mostly alone. I do have a bit of long-distance family support in the form of someone who partially subsidizes my pet care expenses, groceries and TV habit. But I don’t have a spouse, kids, siblings. My parents don’t provide much support in my life, which is not a condemnation or critique of them, just a reality. I don’t have someone to take me in or pay my bills. And I had gotten to daily panic attacks over my last $5,000. I had increased my antianxiety medication. My friends were trying to figure out how to help. One generously paid my rent that month. But no one had solutions.

The terror before my approval was all-consuming.

That is terror that millions of people are living with now.

And a terror that many still live with even if they receive benefits, because most people do not receive enough income to live on through SSDI or SSI.

SSI maxes out at $943 a month in 2024 ($11,316/year). This is funded by taxpayers and administered by the SSA.

The national average 2024 SSDI payout is $1,537 ($18.444/year before Medicare insurance premiums of $175/month or more), and my state average in New York is $1,540 ($18,480/year). SSDI is based on FICA taxes you paid while working, which are based on how much you earned. So the more money you made when working, the higher your benefit. The maximum allowed benefit is $3,822 ($45,864/year before health insurance). I don’t think I know anyone who gets that.

The living wage for 2024 where I am, Tomkins County, New York is $18.45/hour = $38,373/year. That’s for a single adult without dietary restrictions ($282/month on food), who has a very good deal on rent ($1,276/month), and limited out of pocket medical expenses ($203/month). Some of those expenses can be quite different for folks with chronic illness or disability.

I love a percentage calculation, so here it is: the average SSDI payout in New York State amounts to 48% of the living wage in my New York county. My income is between the two, which makes me fortunate in the context of my peers. But not so much as a human navigating the process of existing.

We must do better.

But for me, as an individual, it is a day to celebrate a certain kind of freedom and stability. A day I felt seen and acknowledged. A day I could exhale. A day I found myself grappling with a new identity. A day that gave me a shot at staying alive.