Once upon a time, my job was being professionally organized. I was the executive assistant at a major corporation in Chicago. My job entailed various administrative duties, most of them revolving around keeping people organized and where they needed to be. I was excellent at it, made a good living, and mostly felt I was thriving.
Flash forward to the fifth year of the pandemic and I’m now struggling to carry out these types of tasks for just myself. I’m nowhere close to thriving; I’m barely surviving. I have Long COVID. It’s left me unemployed, broke, and fighting to keep my head above water.
While many articles have focused on the disabling symptoms of the disease, I’ll share a side that we don’t often hear about—the neverending administrative work it necessitates.
I contracted COVID-19 in 2020, and by summer 2021 my chronic fatigue, migraines, insomnia, brain fog, dizziness, heart palpitations, and shortness of breath had become so debilitating that I could barely get out of bed. As such, living on my own, taking care of myself, and working full-time were no longer possible. So I left my job and Chicago, and moved back home with my parents that fall.
I expected to get plenty of rest, help with chores, and heal in a few months. Then, I would get another job, save up money, and move back to the city. However, I haven’t been able to do any of those things. I can’t even hold down a part-time job. This illness has rendered me unemployable.
Although, ironically, I do have to work full-time on the details of having Long COVID — it’s just unpaid. It takes administrative and organizational work to: research and find the right doctors, schedule and attend appointments (up to eight a week), see the specialists those doctors recommend, regularly travel long distances for appointments, keep up with notes and miles of medical paperwork, repeatedly deal with insurance issues, and the list goes on. And that’s just the medical side of it.
I actually do just as much administrative work on the government programs side. In addition to paperwork for Medicaid and food stamps, I’ve spent an exorbitant amount of time and energy over the last two years attempting to obtain disability benefits. In essence, trying to prove I can’t work a full-time job, has become my full-time job. Sick people should not have to be put through this.
When applying for disability, I was forewarned that the government always denies the first time you apply, and the appeal after that. I was also informed that the process is designed to be incredibly complicated so that people will give up, and to expect it to take about two years to get approved. That all turned out to be true.
To this day, many people with Long COVID continue to get denied these benefits, even though Long COVID can be recognized as a disability.
Most adults have had to make frustrating phone calls to insurance companies, medical offices, and government agencies. I know many can relate to these irksome tasks. However, it’s a special kind of torture spending a handful of hours a day, several days a week, for two years doing this. Combine that with debilitating fatigue and other symptoms, and it’s a winning combo that sparks, “what did I do to deserve landing in this level of the underworld?”
How had I gone from a well-paid, full-time job —to now working full-time on my illness, for free?
What’s even more unbelievable is that I’m one of the lucky ones. I have a wonderful support system of people helping me. My mom makes my meals, my dad takes care of my pet, I have no rent, and all I have to do is my medical admin. Yet, I can barely manage this duty. With all it entails, even an able-bodied person would struggle. But for a disabled person? It feels impossible.
On a bad day, I could have so much fatigue that I’m unable to do any administrative work at all. And sometimes, the stress of gaslighting from uninformed doctors, battling to get insurance to cover something, or a novel’s worth of other administrative hiccups that are inevitably encountered along the way, could make my symptoms worse.
A system that’s supposed to help us is actually designed to be so hard that we give up. If I didn’t have the privilege of living with my parents, there is no way I could’ve done this. How do people without my privileges manage this? I’m not sure they can.
It feels like a sick joke that someone who recently had CT scans revealing their brain has atrophied a concerning amount (it took me 10 minutes to remember the word atrophy while writing this) is expected to keep up with so much work to receive their entitled government benefits.
A system that’s supposed to help us is actually designed to be so hard that we give up.
As of last month, I was finally approved for disability. Almost two years after I applied. I’m receiving an amount that is considered higher than average, based on my work history. Nevertheless, I’ll still barely be above the poverty level, and it’s about a third of what I made in 2021. Yet, I’ve never worked so hard for any amount of money.
What it took for me to win my disability case:
- Perseverance: Don’t give up. Plan for there to be at least a couple of denials before there is an approval. And know that the process is going to take two years or more. The system is designed to make you give up. Don’t let them win.
- Support System: Recruit everyone in your life that you can to support you. Ask loved ones to help with chores, cooking, and errands. Fighting for SSDI takes all of your time and energy. You will also need people who are willing to lend an ear when you need to vent about how frustrating the process is. May I also suggest a pillow to scream into?
- Consistent Doctors’ Notes: My case was won because I had three years’ worth of consistent, accurate, and detailed doctor’s notes. Bring a detailed list of everything that is going on with your illness to each visit. After every appointment, make sure the doctors are posting accurate and detailed visit notes. If they aren’t, contact them and request the appropriate updates be made to your file before you submit those notes to SSA.
- Proof: You are not trying to prove you are sick. You are trying to prove that you are not able to reasonably work enough to make a living. You need to provide as many testing results, rehab notes, and letters as you can that state you aren’t able to carry out a job. I relied heavily on detailed letters from former employers who noted my decline in work performance and inability to continue working. I also asked for a similar letter from my therapist, who also acted as a character reference.
Today, I’m finally able to stop worrying about income for a while. However, I’ve yet to receive any medical treatments that have helped me get better. Now that I can stop spending my days dealing with the financial portion, I’m hopeful I can use this time to focus on my physical health and heal. It’ll still require a lot of medical admin work to receive the care I need, but it’s significantly less now that my financial health isn’t in such deep peril.
All of my hardships are minimal compared to people who don’t have the privileges I do. We need a better system and more funding to support medical studies, accessible healthcare, caseworkers who can assist us with administrative tasks, and countless other resources that can aid the Long COVID community. We’re drowning, and only the privileged are keeping their head above water.
Krista Atkinson is an Illinois-based freelance writer. She is passionate about advocating for awareness around chronic illness, mental health and wellness, and body positivity.
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