This week marked a huge development in the ongoing health mystery that’s been wreaking havoc on my body this year.

Over the last six months or so I have felt like a walking corpse. Chronic fatigue, brain fog/difficulty processing information, dizziness, shortness of breath, horrible sleep, repeating infections, hair loss, frequent headaches and ringing in my ears… It felt like it would never end.

Since getting COVID in March, things have been more off than usual; they weren’t perfect before then, but it at least felt manageable.

That lack of being able to manage has left me with a lot of shame, because I haven’t been able to produce as much or as quickly as I’m used to. I’ve cancelled so many meetings, asked for an unbelievable amount of extensions, have taken more days off work than I have in years…because it felt like my brain and my body had simply given up on me.

My road to being uninsured

When some people hear I don’t have health insurance, they clutch their pearls. And if you’re feeling the urge to warn me about the consequences of the choices I’m making as a grown woman, I would respectfully encourage you to scream into the void and trust that I know what’s best for me :)

I’ve been doing Type C Creative full-time since September 2023 after getting laid off from my full-time job.

Because my employer was based in California, I had access to incredible health insurance even though I was living in Florida at the time. Before that, I was paying $400/mo out of pocket for the shittiest marketplace insurance you can imagine.

My deductible was incredibly high and the only thing it covered were annual physicals with a $60 copay. I was still paying out of pocket for dental, vision, therapy, and prescriptions. I relied on Sesame Care to see specialists and have my prescriptions filled because it was more affordable.

Basically, aside from annual checkups, I was paying for everything out of pocket on top of $400/mo for useless insurance.

So when I lost the cushy policy from my employer, I decided to forego health insurance for a bit. Mainly because I couldn’t afford it after losing my job.

But even as my financial stability increased as a self-employed person and my physical health started to decline, I still felt reluctant to opt back in.

I continued to rely on Sesame Care, GoodRx, and companies like Wisp for on-demand, affordable, out-of-pocket care. If I thought something was off, I ordered my own lab work through Any Lab Test Now and sent the results to my doctor on Sesame to discuss.

I was met by an occasional $300 urgent care bill, but I slowly learned where to go for the most affordable (and transparent) care. It has helped tremendously being back in Charlotte, where alternatives like this are more readily available than they were in rural Central Florida.

Obligatory plug to support your local Planned Parenthood or other clinics in your area that are losing funding under this evil administration.

I also got a CareCredit card, which helped me pay for a crown on my tooth last year without paying interest. (I found out my dentist offers discounts to people who are uninsured, which is more common than I realized. Now I always ask!)

Is being insured really going to keep me safe?

The conclusion I’ve come to for myself is no, at least not right now.

I’ve been having the symptoms I listed above at varying degrees for almost 10 years, long before I was uninsured.

The first time I tried figuring things out was in 2017 after I almost passed out during a kickboxing class. The teacher recommended I see a doctor and have them test my iron levels.

I went to my primary care physician; she ordered lab work, which came back normal. I got a voicemail saying, “You’re not anemic. Call us if you have any questions.”

So she had me do an asthma test next. Also normal. The woman who administered the test actually said, out loud, to my face, “Maybe you’re just out of shape.” Something I’m sure she is only comfortable saying to someone with my body type.

Finally, my PCP sent me to get an ultrasound on my heart. Also normal. “Maybe it’s just anxiety?,” she offered at our follow-up appointment and then sent me on my way.

The cost to do all of these tests was minimal with insurance, but ultimately proved useless. I had no answers. (Except that I was fat and anxious, two things I knew before the process began.)

Every few years I’d muster up the strength to try again, hoping anyone would have even an ounce of interest in helping me feel better.

I did a lot of stuff on my own, too…

I’ve taken supplements, have tried different sleep routines, have built systems to help me work while being foggy and exhausted. I’ve created better boundaries and have become a fiercer advocate for myself and my needs.

I’ve had countless conversations with other women who, like me, have been given the runaround by doctors who “don’t see anything wrong” but have no idea how miserable we’re feeling in our bodies.

Since being uninsured, I’ve had to think further outside the box in order to get to the bottom of things. Something I probably would have to do with insurance also, but at least now it feels like a choice.

Alternative methods helped me find the ‘next step’ I was looking for…

After receiving more “normal” results back from the thyroid panel I ordered (for myself lol) earlier this month, I’d finally reached a breaking point. I began doing some research into companies like Function, Joi, and Mito Health to see if I could finally get some answers; these are companies that test several biomarkers (100+) at one time, going beyond the typical “routine screening” you may get at your annual doctor visit.

At first, I was skeptical. One glance at the /medicine subreddit and you’ll see hundreds of comments from healthcare professionals talking about how companies like this are a scam. But there were enough comments from people who’d had good experiences to make me want to take the risk. After all, isn’t traditional healthcare a bit of a racket too?

I ultimately chose to go with Mito because it felt like the best option for my situation, and I liked that I would be able to consult 1:1 with a doctor.

I filled out the health history with a little help from my parents, went to Quest for lab work, and started getting results the very next day.

It all led to this…

Low. Iron. The thing I was initially tested for in 2017.

I’ve since learned on Reddit that ferritin, while often crucial in determining iron deficiency, is not included in the ‘routine’ lab work I have been doing yearly.

I had to laugh. At this point in the process I assumed it would be something far more rare. Why else would it have taken this long to figure out?

Dr. Reddit never sleeps

After getting my results, I immediately took to Reddit again. Now I knew what to search for.

I was met with post after post highlighting similar experiences to mine, some people having to lie to their practitioners to even get certain tests ordered for them.

While it’s sad these community forums are needed, it’s also beautiful that strangers can come together to give advice, share their experiences, and help others get a little bit closer to figuring out what’s going on.

It’s also incredible that we all found the strength to fight for answers when, most days, we could barely get out of bed due to our symptoms.

What’s this got to do with systems work?

I really wanted to write about this because being uninsured in the U.S. comes with a lot of stigma. For a while I was embarrassed to admit it because it made me feel irresponsible and unstable.

The truth is, I could probably (barely) afford to pay $400/mo for shitty insurance again, but I would be doing it solely to feel less irresponsible and unstable—while likely putting myself in an actual irresponsible and unstable financial situation as a result.

Going through this process has helped me come to terms with the fact that our healthcare system is very, very broken and a lot of the alternatives solutions we have are built to make other people a lot of money. So I’d rather find solutions that work best for me instead of focusing on how I’m “supposed” to go about doing things.

I didn’t write this post to convince you to cancel your insurance policy lol. Truthfully, if I had reasonable access to it, I would likely jump at the chance.

But for those of you also working for yourselves, in states that don’t offer many (if any) good options, I want you to know that you’re not alone—and you have every right to make the decision that’s best for you, regardless of pearl clutching.

I’m still waiting to hear back on what to do with these results, and I hope I can get to an effective treatment plan soon. Once I have enough iron in my body, it’s over for y’all!!

Peace, love and fuck the system,

Andrea