Why GoFundMe

The sick truth about medical misfortune in the US

I’ve been financially independent and responsible in my adult life. I’ve made a stable income as a public interest lawyer for over 25 years, and as a single mother and head of my household, I’ve shared fully in the expenses of raising my three daughters. I’ve carried medical insurance, paid my mortgage and other bills on time, and had reserved a few months’ income in the event of a misfortune.

Even so, I was terribly underprepared for a cancer diagnosis at age 51, which came by coincidence the same month that I launched into self-employment as an independent consultant.

I didn’t see it coming. I’d taken good care of myself physically. I ate well and exercised. I did yoga and took meditation walks, ran trail races and heaved hay bales on my farm.

My lymphoma diagnosis came in June 2021. Over the rest of the year, as my lymph tumors waxed and waned, I had varying degrees of discomfort and ability to work. For parts of July-November I felt okay, though some level of fatigue and discomfort was always present. Mentally, I found it hard to grapple with my diagnosis while keeping all the other balls in the air. As the lymphoma became more aggressive in November and December, my ability to work plummeted. I stopped taking on almost all new contracts—with chemo on the horizon, I was afraid to overcommit. At the same time, my medical expenses soared. Between biopsies, PET-scans and ER visits, I quickly hit my annual out-of-pocket insurance max of $8,000. Given this and my lost income, I exhausted my “rainy day reserve” by the end of January, just as I started treatment, with new medical bills mounting quickly in the new year.

I turned to retirement funds, taking tax penalties for early withdrawals to pay monthly bills for my home, as well as my daughters’ expenses. I worked as much as I could through six months of chemo to earn at least some income. This was about equivalent to what I could possibly have received through temporary disability from the state (not a given, many people on chemo are denied it, and at any rate I decided I wanted to avoid this in lieu of working part-time). This totaled approximately a third of my regular monthly income.

I stressed out all the time about money, doing calculations over and over again in the notebook next to my bed during steroid nights. I’d never had a time in my life outside of maybe a few days with the flu when I felt this unable to work, and I didn’t know how long it would take after chemo ended to get back in the saddle. (As a reference point—for better or for worse—I resumed working on a project deadline the day after one of my daughters was born, while she napped.)

I couldn’t believe this was happening to me.

Friends urged me to do a GoFundMe but I felt stopped—mostly by pride, and also by the feeling that there are bigger and more important causes, as well as my concerns that the platform can make financial and social inequalities even worse. One family member scoffed and said “around here, people use that to fund their honeymoons.” Others encouraged me, sharing that to them it was just a modern day form of a neighborhood casserole brigade, why not give people who wanted to help an easy way to do so? 

With the guidance of a friend, I did end up posting a GoFundMe the first of April. I remember that day very clearly. I pushed the publish button then cringed. What had I done. This felt way too vulnerable at a time when my instinct was to self-protect, not render myself even more exposed.

I ended up raising almost $34,000 in two months, an amount that helped me pay off medical debts incurred in February and March and covered most of my expenses through June. THIS WAS PIVOTAL TO ME, both in terms of my financial wherewithal and my mental health.

The value of the GoFundMe went way beyond the dollar amount. Over 180 people contributed to the campaign, and many people gave amounts that I knew were stretch gifts. Friends from around the world, especially my colleagues in Africa, donated generously. My kids’ friends chipped in—sometimes $5, sometimes $20. Others gave larger amounts that added up quickly. I considered every gift to be a gift from the heart, and as contributions came in I felt increasingly carried and safe in a way I never had before. The message came in loud and clear through the weird channel of GoFundMe: whatever happened to me, my community would be there, holding me and my family up. This experience shifted my view of life, death and community in a profound way. I don’t think I’ll ever feel so afraid or alone again. 

I thought a lot about what cancer would be like for someone without the assets, reserves and social safety net I have. An estimated 30% of people in the US don’t have medical insurance. This alone would have driven me to bankruptcy, as my medical bills were astronomical. I would have lost my house, my farm and the animals, my ability to provide for my daughters. I read an article in the midst of this time about a homeless woman in Seattle with metastasizing breast cancer, and wept. I could not imagine going through any of this without the comfort of a safe home.

I also felt really mad. Despite the GFM lift, it would take me quite a while to recover fully from the resources I lost to cancer, if I ever could. I had this persistent thought of I DIDN’T DO ANYTHING WRONG. I know that is dumb. I have more unearned fortune in this world than is possible to tally, if only by virtue of the spot I was born, the family I was born into, and the community where I was raised, all of which gave me a big boost on the GFM platform. Things just happen to people. And when they do in our country, no matter how responsible or fortunate you’ve been, you may be out of luck.

Naomi Ishisaki wrote a fantastic recent piece in the Seattle Times on the use of GoFundMe for medical necessity. In it she notes:

A look at some of the active Seattle-area GoFundMes reveals our country’s dirty little open secret: a huge chunk of fundraisers are for medical expenses or related medical needs. And the word you see over and over? Cancer.

One study found that 42% of people with cancer depleted their assets within two years.

True that cancer caught me off-guard, but I’m not alone—it seems that our whole country is caught off-guard. How can it be that we haven’t figured this out better? Surely medical necessity is not a new phenomenon? And yet we flail: medical issues drive over 66% of personal bankruptcy, with insurance falling far short of covering expenses. While GoFundMe proved a powerful tool in meeting my gap, it is not equally as effective for everyone. As Ishisaki and others point out, it’s a platform that favors the privileged and well-connected, not those with the greatest need.  

And one more thing: wading through medical bills and insurance claims takes a huge amount of time, organization and attention to detail, scarce commodities for most cancer patients, who are also having to sort through a dizzying amount of information on treatment options, procedures and after care, often while feeling sick or in pain. This stuff is not straight forward at all! You can easily either pay expenses you don’t have to or miss bills that end up going to collection. For a single procedure like a biopsy, you will get multiple bills, and some will come in long after you think you’ve paid the whole thing off.

I sorted a relentless pile of bills—those to pay now, those to pay later, those that required follow up. None was a happy category; the second and third felt overwhelming as my resources dwindled and chemo brain fog peaked. I felt ashamed of my inability to pay bills as a matter of course, and sometimes even to understand them.

The more that I talk about my experience, the more I realize that so many of us undergoing acute medical challenges share this feeling of financial overwhelm and shame. GoFundMe can provide a powerful channel for community support, and I found that the outpouring of help from my friends cut through the vulnerability that I initially felt. But GoFundMe is not enough. Our casserole dish is cracked when it comes to equitable and accessible support, and we urgently need new ways to address financial burdens for those who are sick and in treatment. Cancer’s not going away, at least for now, but there is no need for one more person to go bankrupt or end up on the street because of it.