When I talk to people about Lyme and other tick-borne diseases, I often admit “It’s hard to believe that such a tiny tick can cause so much damage.” I am usually referring to the physical and neurological toll of the diseases, but there is another important toll that people don’t always know about: the financial one.
Lyme is tough on people, and on their finances. Beyond the cost of treating the disease, there are also the resultant emotional costs. In addition to the stress of not feeling well—and often of not yet having an accurate diagnosis—patients often are too sick to work, causing high anxiety coupled with feelings of guilt and inadequacy.
I know this shame vortex well, for I have lived it.
When I first became too sick to work, I was between jobs. At the end of the 2003 school year, I had quit my job teaching high school English and Journalism in Colorado. My plan was to work as a camp counselor that summer, and as a ski instructor come winter. I figured I’d be able to cover my fall expenses with my meager savings and my summer paycheck. My winter ski instructing job was already lined up.
The plan left little margin for error, but at 25 years old, I didn’t consider that. I was young and, I thought, invincible.
Then I got mono. I barely made it to summer camp, slogged through my work there, and returned to bed at the end of the season. The mono slipped in to chronic Epstein Barr virus. I spent the fall in bed, my symptoms worsening and my anxiety rising as the ski season grew closer and closer. By late fall, I was still bedridden, and my doctor told me there was no way I would be able to instruct novice skiers. Unable to care for or support myself, I had no choice but to move back into my parent’s home in Connecticut.
On the one hand, I was very lucky. I had family who could and would support me. They sheltered and fed me, and helped with living and medical expenses when the little money I had ran out. Not every patient has that kind of support.
Still, I struggled. This was in the days before you could stay on your parents’ health insurance until age 26. My plan had been to pay the expensive COBRA fee to keep my Colorado health insurance active through the fall, at which point I would be covered under a new plan by my ski instructing job. But you can’t be covered if you aren’t working. Well, sometimes you can if you take medical leave from a job you already have, but I hadn’t officially started working for the ski resort. Moreover, I was now in Connecticut, so all of the doctors I saw—and there were many—were out-of-network.
I canceled my Colorado plan and purchased private insurance in Connecticut (long before the whole debate over whether someone should be covered for a pre-existing condition). The new insurance covered most of my doctors’ appointments, but at a steep fee.
These costs started to take an emotional toll. Every day I wondered, “When will I be able to work again? What if I can’t? How long can my family support me? Am I ruining their lives and plans?”
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I felt guilt and shame for not being able to support myself, especially since I’d previously been independent. It’s one thing to be a dependent child, but it’s another entirely to reverse that and move backwards from independence to dependence. Nobody involved expects or wants that to happen. Many families aren’t prepared for it. Everyone feels a financial and emotional strain.
It took two years for me to get an accurate diagnosis of Lyme disease with the co-infections babesia and ehrlichia. By then I’d already racked up big medical bills, and the journey was only just beginning. The best Lyme Literate Medical Doctors (LLMDs) didn’t take insurance, so appointments were very expensive. Then there was the cost of medications and supplements. Luckily, my insurance considered my intravenous antibiotics as emergency medication and covered that treatment in full. I got partial reimbursements for my doctors’ appointments, and found in-network adjunct providers (such as a therapist, a physical therapist, and a sleep doctor).
To help defray living costs, I applied for Social Security Disability benefits. Getting them was a tough uphill battle, one that I didn’t really have the energy or strength to fight. My case was continually denied, until I went before a judge who happened to be Lyme literate. I finally got monthly benefits—which were then taken away the minute I started graduate school. The presumption apparently being that if I could (usually, but not always) attend class for eight hours a week, then I could work a forty hour work week.
Of course, I couldn’t.
But again, I was very fortunate to have had benefits at all, and to have family help, too. Many patients can’t afford to see an LLMD, and they can’t get their insurance companies to cover treatment for tick-borne diseases. Some need PICC lines and can’t get them. Some start treatment and then have to stop when the insurance company baselessly decides they’re done. And still there is always that nagging guilt and anxiety.
So what is a Lyme patient to do?
- Global Lyme Alliance has put together a resource page to help. It includes information on Treatment Access/Reimbursement Resources, Federal and State Assistance Programs, and Transportation Assistance.
- Another great resource is the 50-State Network Patients Guide To Insurance Enrollment Patients Guide to Insurance Enrollment, which can help you with the insurance quagmire.
What can you do if you are not a Lyme patient, but know someone who is?
- Offer to help them review websites like the ones above and to read through medical and insurance documentation. Many Lyme patients struggle with brain fog and confusion, and reading such documents can be overwhelming.
- Offer to be the patient’s advocate. When their insurance and disability claims are denied, help them to write appeal letters.
- Start a fundraiser or meal chain. Funding pages pop up all the time for cancer patients, but many people don’t realize that Lyme patients could use the same financial help. Any funds you can raise to help defray medical costs would be useful, too. Patients need healthy meals but are often too tired to make them or get to the store. Have friends sign up to bring the patient his or her meals.
Tick-borne disease can easily put people out hundreds of thousands of dollars, not to mention the emotional costs. But do not despair— help is available!
Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at: email@example.com.