How Living in the US Limited Me to Making $2,000 a Month

We all know the classic picture of the American dream: a steady job, a happy marriage, a house with a yard, two kids, a dog, and a white picket fence to tie it all together. If you’d asked me in high school how I’d pictured myself in 10 or 15 years, that’s how I would have answered, minus the dog. It’s what we’re supposed to want, and it makes a great default answer.

What happens when you start wanting more, though? I started my first business back in 2016 when I opened an online store. I had no idea what I was doing, but I learned fast. I broke even on my investment and started a design studio instead. I was doing well too. Well enough to try traveling as a digital nomad with Singapore as my starting point. I made it through three countries before I had a mental breakdown and was forced to come back to the US for treatment.

At this point I’d only managed to check one thing off the American dream to do list — the happy marriage — and I wasn’t so sure I wanted anything else on the list. I could never picture myself having kids here, and white picket fences always struck me as kind of tacky.

Then the bombshell: my husband was diagnosed with Crohn’s Disease just before the pandemic hit in April 2020. Crohn’s shouldn’t have been a surprise; it’s a disease usually diagnosed in teenagers, but his case had been missed due to family circumstances. We were thrust into the new world of navigating chronic illness overnight. With that diagnosis, the American dream swiftly warped into the American nightmare.

Being Pushed with No Safety Net

With the current regulations, children in the USA are kicked off their parent’s health insurance when they turn 26. After that, they’re expected to have an established enough career to have been offered insurance through their work. I hit the work insurance checkpoint at 25. I was working a full time job while running my business on the side, and my day job offered several insurance packages. I simply took the cheapest insurance option. With no Crohn’s diagnosis, we didn’t feel the need to shop around.

I left that job later in the same year as my business income was poised to overtake my W-2 income. I wanted to take advantage of the fact that I’d designed my business to operate entirely remotely. We moved to Singapore first, then Thailand and Indonesia. After my breakdown in Bali, we came back to the US. I was able to hop back on my father’s insurance, and we used that to get my mental health back in order.

Then I turned 26. I was still in therapy, and my husband was still dealing with mystery stomach issues. As I’d always been the primary breadwinner and still wasn’t back to work, we decided to apply for Medicaid and focus on our health for a year. That year happened to be 2019-2020. By the end of that period was successfully cleared of depression and we’d finally figured out what those mystery stomach issues were.

Cue Total System Breakdown

Here’s the timeline at this point in the story:

• March 2019: Enrolled in Medicaid
• October 2019: Finally found the right doctor to help figure out my husband’s mystery illness
• April 2020: Crohn’s Disease Diagnosis
• Early March 2020: Our Medicaid enrollment renewal date.

Having spent so much time in Asia, we’d had our eyes on the coming pandemic since February. My husband had been scheduled to start on the biologic medicine Humira to combat his Crohn’s disease that March, but we held off in anticipation. We decided to isolate ourselves while we waited for research on how COVID-19 interacts with biologics.

I spent roughly 20 hours per week in April researching healthcare options for us. We were at a crossroads. With my mental health back in order, I was poised to take my business off the backburner and start making good money again. We also were already aware that my husband would likely have to stop working as soon as the pandemic hit our area, so we needed a solution for me.

I did the math on every single healthcare option I could find. I calculated the out of pocket costs we’d have to cover in order to pay for a plan comprehensive enough to support the medication and hospitalization needs my husband would reasonably face. We faced a laughably high number. $20,000 per year was the out of pocket cost to us for any private health insurance plan that would cover his needs.

We knew there was no way we could count on increasing our income another $20,000 by the end of the year. Taking a private health insurance plan in that situation would mean playing Russian Roulette on my husband’s health, and there would only be a single blank in the gun. We weren’t willing to take that risk. Medicaid would fully cover our health insurance needs, though, so we took the only real option we had. We stayed on Medicaid. 

Choosing Medicaid meant adhering to their rules: they have strict income limits in place that are supposed to ensure only the most needy are in the program. For us, that number is just under $2,000 per month. Since March 2020, we’ve had to turn down every opportunity to increase our income beyond that amount because we can’t afford to lose Medicaid. Humira costs roughly $6,000 per month at retail prices, but it turned my husband into a functioning human for the first time in 15 years. We are not letting that go. 

And yes, I can hear those questions now, so let me answer them for you:

• Yes, we could qualify for extremely low or no cost Humira options from the manufacturer, but that isn’t a real solution. Crohn’s can make basic medications like painkillers much trickier to deal with, and it would turn any hospital visit into certain bankruptcy if we weren’t insured.
• Yes, the US is supposed to prevent discrimination in pricing based on preexisting conditions, but that only applies to the premiums they charge. We found that a majority of health insurance companies only had what we need at their highest level plans. The scummiest of them also pulled tricks such as covering the cost of a medication and then refusing to cover the cost of the nurse medically required to administer said medication.
• No, there aren’t other medication options. Crohn’s doesn’t have a ton of options to begin with, and once you find a medicine that works, you want to stick with it as long as possible. If you stop taking one, you build up an immunity to that medicine and it will not work again in the future.
• Yes, we could try and get jobs that would offer health insurance that covers us, but that isn’t what we want. We both have businesses. I don’t want to work for Apple, Amazon, Google, or the US Government. I have had to repeatedly turn down offers from companies that do have health insurance simply because the coverage isn’t even close to enough for our situation.
• Yes, our state does offer subsidized private healthcare plans. After speaking with other people in our position, however, we realized trying for one of these would be high risk with little reward. There are no consultations beforehand to see if it might be worth a switch. You have to apply outright, and you’d forfeit your ability to qualify for Medicaid in doing so.
• No, my husband doesn’t qualify for disability. He doesn’t qualify for one main reason: Humira works on him. Consider the irony there… he gets no help paying for the medication he needs to be well because that exact same medication works as intended.

All of these considerations make Medicaid the best option. By this point, we also know that moving to Italy was a valid solution, and that was the backup plan for our backup plans.

March 23rd 2020: Our state goes into lockdown for the Pandemic

My husband has to leave his job. He worked in a job with heavy per-to-person interaction, and our doctor requested that he quit for the sake of his health. This luckily did qualify him for the Pandemic Unemployment Assistance the federal government offered, and that helped us stay afloat.

I decided to stop taking an income from my business and took a part time job writing. The goal behind this was to reinvest everything I made back into my business and get us to the point where we could afford that extra $20,000/year as quickly as possible.

We’ve been limited to making $2,000/month for a year and a half. I lost count on the offers I’ve had to turn down since we were forced into the cracks of this country’s terrible healthcare system.

How Did Things Get So Bad?

This is the dark side of living in the United States: within my lifetime, it’s always been this bad. In fact, this is actually much better than it used to be. Being able to stay on my parent’s insurance until 26 was a blessing that allowed me to start my business in the first place. The regulations laid out in the Affordable Care Act are also a huge part of why we were able to get help from Medicaid at all.

There is no way we could have planned for this either. At this point we are just a small boat stranded in a windless sea after a storm. The storm took our oars, but we still have our compass. We are lucky enough to have another country sending a rescue boat after the US ignored our distress signal.

And Things Are About to Get Worse

The United States Supreme Court is hearing more arguments against the Affordable Care Act in two weeks. With the death of Justice Ruth Bader-Ginsberg and the Republicans rushing through her replacement, there is little hope that the ACA will stand. My husband and I actually had to have an appointment with his doctor to work out what to do if we lose our insurance entirely. We aren’t even bothering to come up with a solution for my health; all we can do is count on the fact that I’m not accident-prone and rush all preventative appointments into the next month.

We do have some hope: Italy is working to get us over there as soon as they can. They know we have plans to move and are eager to have my business, and my taxes, in their country. The US just doesn’t seem to care.

And I’m not the only one.

It’s extremely common for those with chronic illnesses to start side hustles to help pay for their own treatment. If those side hustles take off, they’re faced with a series of hard choices: do they pursue the opportunity and risk their health by changing their insurance, or do they put their health first and keep their regular job for the insurance? Of the dozens of entrepreneurs with chronic illnesses I have met, only one has taken the risk and made it.

All Entrepreneurship is Risky, But That Risk is Doubled for Some

If you have a chronic illness, every leap you take has to be a little further than a healthy person’s. Every starting point is lower. Every jump needs to take you a little higher. The cycle is maddening, and the “pull yourself up by your bootstraps” mantra becomes toxic.

When you’re stuck with an income of $2,000/month, you also don’t have any wiggle room with your budget, especially if you have student loans or rent. My student loans and our income cap have repeatedly made it better for us to stay with our parents than move out. We don’t have money left over at the end of the month. We have no real disposable income, and our food costs are much higher than average because Crohn’s has limited what my husband can eat.

All in all, the US health insurance market has become a huge obstacle in business development in more ways than one, and other countries are starting to notice. More and more nations are luring small businesses away from the US because they recognize the potential economic impact small businesses bring.

If you are in a similar situation and in the US, know your options:

• Join local entrepreneurship groups and ask questions about insurance. Local groups and usually better equipped to answer questions related to health opportunities in your area.
• Join international business groups, especially Facebook groups, to see what other opportunities there are. Digital nomad groups in particular are great for problem solving around complex health situations.
• Contact your state’s health exchange and explain your situation. They have representatives who can tell you about solutions you may not be aware of.
• Ask your doctor what the game plan would be if you were to lose insurance. If you have a chronic illness, you likely have a strong relationship with your doctor. One of the options our doctor came up with was including us in an upcoming study for a new Crohn’s medication. It isn’t even close to ideal because my husband really should stay on Humira, but it is what we would have to do in a crisis.

Do you have a similar story that you’d like to share? Contact us at info@michellejamesina.com. We’d love to hear your story and are looking for contributors.