The $20,181 Cost of Living With an Autoimmune Disease ...0

Welcome to Show the Receipts, a series where we ask interesting people to share exactly how much it costs to get shit done. No matter the task, we're tracking every last dollar from start to finish. Up next: having an autoimmune disease

Most 25 year olds don't expect to become bedridden in the middle of New York, but life had other plans for Ellen Rudolph. "I was experiencing a whole host of really strange, debilitating symptoms," she tells PS, recounting brain fog, joint pain, and debilitating fatigue that started in 2018. "I was having tremors, memory loss, all kinds of things that just weren't really normal for someone in their mid-20s."

With her quality of life suddenly flipped on its head, all Rudolph wanted was answers, but she soon discovered that those come at a price. She spent the next several months in and out of the ER, frequenting UrgentCare, and bouncing between specialists. Then in 2020, Rudolph learned she had a positive anti-nuclear antibody (ANA) - a major sign of an autoimmune disease. The news felt validating, but her journey was far from over.

Diagnosis may offer important clarity and closure (especially where treatment is concerned), but it doesn't necessarily alleviate the physical, mental, and financial toll of an autoimmune condition. Because insurance typically only covers the bare minimum when it comes to treatment, people are often left financially vulnerable during their toughest moments.

For Rudolph, being diagnosed with an autoimmune disease meant she'd have to reclaim her health with the help of a functional medicine doctor, frequent labs, monthly acupuncture, and regular doctor's appointments. That's not to mention mental healthcare or preventative services like full-body MRIs, all of which cost a pretty penny. So, five years post-diagnosis, how much does Rudolph's autoimmune condition continue to cost her? Here's the full cost breakdown.

Task: Navigating an autoimmune condition Occupation: CEO and co-founder of WellTheory, a platform for autoimmune care Location: San Francisco, CA Timeline: One year

The Receipts

In network doctor visits: $510 Testing: $1,578 Concierge doctor visits: $2,500 Quarterly labs: $5,632, not covered by insurance Supplements: $5,782 Procedures: $2,499 Therapy: $240 Monthly acupuncture: $1,440 Miscellaneous: $1,680 Total: $20,181

Price Breakdown

To explain exactly what she spends her money on, Rudolph broke down some of her services in greater detail:

Labs: "I do a lot of labs looking at different biomarkers," Rudolph says. This includes concierge lab services done with the help of her functional medicine doctor. "Again, that's entirely out of pocket." These concierge labs don't include the additional "specialty labs" she gets done every quarter. Those look for things like gut health status and hormones - "sort of a layer deeper than what you're able to get from the tests that are covered by insurance," Rudolph says.

Supplements: "Supplements are a big part of my routine as well," Rudolph says." It was funny going through this, this is probably the most surprising - how much I spent there." She attributes this high cost to the therapeutic way in which her doctor uses supplements, giving personalized recommendations based on her labs.

Procedures: Popularized by celebrities like Kim Kardashian, the Prenuvo scan is essentially a full-body MRI. "For me that's more of a prevention thing that identifies different types of cancers," Rudolph says. "But [I'm] also wanting to make sure I don't have other things going on."

Therapy: Perhaps a less expected but equally important part of her autoimmune care is regular therapy. "It's very lonely to go through the diagnosis journey and have doctors tell you it's all in your head," Rudolph says. There's some grief associated with your life changing."

Acupuncture: Rudolph says she works with an acupuncturist monthly. Acupuncture is thought to help with pain relief, digestive problems, anxiety, nausea, and more.

How I Did It

For Rudolph, health goes far beyond labs and doctor's appointments. Since being diagnosed with an autoimmune disease, her entire lifestyle has shifted to prioritize health and wellness, which also enables her to cut out some unnecessary spending. That said, she also wishes there was more systematic support to help with expensive treatments and important procedures. Here are her thoughts on everything from insurance to preventative scans, as someone five years in the game.

PS: What is the most expensive part of having an autoimmune condition? ER: "When I was going through the diagnostic journey, I was fortunate. I mean, I did wind up in the ER once or twice, but that was mostly covered by my insurance plan. For me, it's been much more about symptom management and maintenance, because a lot of these conditions don't have cures. It's something you're really managing over a lifetime. So, how do I stay in this state of remission and not backslide into a flare-up? There are a lot of expenses that go into that.

What surprises me most is that 90 percent of my costs were out of pocket. Only a fraction were covered by insurance. It speaks to the lifestyle approach that I've taken. The reality is that my lifestyle expenses span all the way from food delivery services I use that help me to stay on track with dietary goals - because a lot of what I use is food as medicine - to non-toxic cleaning and personal care products and cookware; the list goes on and on. I think this speaks to how trying to heal in this holistic way is a larger lifestyle shift that has a ripple effect across your whole life. In some ways it's hard to capture the true expense.

PS: How have you been able to save? ER: There have been a couple areas where I've pulled back my spending that are not related to my health. This is definitely the area that I invest in the most. Areas where I've cut back have been more around discretionary expenses - things like shopping for clothes, entertainment, and personal travel. I don't drink alcohol for health reasons. So things like not going out with friends and buying drinks, that's certainly helped. Those are some areas where I cut back and focused on saving in order to really invest in my health because I feel like my health is my wealth. My health journey also made me realize that some of these material things just don't matter quite as much.

PS: What's worth spending more on? ER: Some of the preventative things have given me peace of mind. We talked about the Prenuvo scan - yes, that is certainly an investment, but for me, knowing that my autoimmune disease hasn't progressed to the point of tissue degeneration gives me a lot of peace. And I think our healthcare system is so reactive. It's like only once you get sick do you actually seek out healthcare. I feel like a broken record saying this, but there's so much around diet and lifestyle that we can do proactively to prevent the onset of some of these chronic illnesses and diseases.

PS: What is something you wish more people knew about regarding the cost of an autoimmune condition? ER: Most people can't afford to invest as much as I am every year in my health. The challenge with the way that healthcare system is set up is these concierge doctors, they spend a lot more time with you than sort of your typical doctor. Your average PCP visits 15 minutes, so they're not really incentivized to actually accept insurance, which is a shame. So that's part of the paradigm that we're trying to change.

Final Thoughts

Although her health receipts are high, Rudolph says they're 100 percent worth it. "My health and wellness is my top priority because I know what it's like to be at rock bottom," she says, adding that it's something she's continued to prioritize and invest in. "It's definitely the top expense in my life."

She knows people can relate because following her diagnosis, Rudolph made a TikTok listing all the things she thought were normal, but were actually indicative of an autoimmune disease. By the morning, the video had garnered over 1.5 million views. "It became clear to me that there were so many other people out there just like me suffering from autoimmune disease and that I wasn't alone," she says. After reading all the comments sharing similar struggles and diagnostic journeys, Rudolph decided to launch her own autoimmune care company, WellTheory, in 2022.

"For me, a lot of the inspiration was wanting to create the experience I wish I had earlier on in my own health journey as a patient," she says. "Some of it was related to cost too, because I was able to really find answers with a functional medicine doctor who does not accept insurance, and I had to pay a lot of money out of pocket." To help make care more accessible, Rudolph now partners with insurance companies and employers so that WellTheory is available at zero cost to the end consumer. "My story, unfortunately, [is] not unique," Rudolph says. "If I can help someone not feel so alone on this journey, it will be worthwhile."

- Additional reporting by Mirel Zaman

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