Choosing Privacy Over the Emotional Cost of Crowdfunding

In the age of social media, many people seem to have forgotten what healthy boundaries are. If you use Facebook, for example, you may notice that some people overshare — whether it’s 200 pictures of their trip to the beach or details of their child’s bowel movements, they demonstrate little discretion or concern about privacy.

While I’ve been more restrained, like most millennials, I’ve posted a lot of embarrassing stuff in my youth. I still use Facebook more than I should, but the older I get, the less information I reveal. Sometimes I’ll share an insight, a frustration, or a silly cat video, but mostly I observe.

I have not disclosed on Facebook what my family has gone through over the last year since my mom’s pulmonary fibrosis diagnosis. If friends from middle school and distant relatives happen to stumble upon this column, so be it — but I have no intention of leading them here.

Does that mean that I’ve missed a huge opportunity to help my family? I have seen, on hundreds of occasions, people taking to the internet to fundraise for a friend or family member who is going through a medical crisis. Even the most reclusive Facebookers will break their silence to share a GoFundMe campaign.

Before I explain why I didn’t throw my family into the giant money pot that is GoFundMe (or similar sites), I will say that I see the value of crowdfunding. It makes sense to ask fellow humans for financial aid at a time when healthcare coverage is so confusing and expensive. People can contribute to the family’s expenses in their time of need, and in return, they get access to updates on the person’s condition. While charity won’t fix the system, it helps a lot of people to get by.

However, the last thing I wanted to do when my mom was admitted to the ICU was to get on the internet and tell everyone about it.

I thought about fundraising as I looked through pages on Airbnb and did some quick math on the cost of a three- to six-month stay in San Francisco. The rent alone was astronomical — and that was before I had calculated other living costs or the medical expenses accrued during a four-month hospital stay, plus a major surgery. Luckily for us, insurance is taking on the brunt of the medical expenses, but still, the cost is staggering.

I considered starting a GoFundMe campaign, but it felt wrong. First of all, I didn’t want to violate my mom’s privacy. I didn’t want people I barely know — or don’t know at all — to read details of her medical history or to learn about her life in this extreme and unfortunate context. I also didn’t want my mom’s terminal illness to become a spectacle to be stalked by faceless masses through a screen.

I know that stories like ours can amass a following, because I am guilty of being on the other side of the screen. I almost always read about GoFundMe campaigns that my Facebook friends share. I want to connect, to know those stories. Yes, I do help when I can, but I’m not made of money. Mostly, I’m curious. I get an empathy buzz from reading about people facing hardship. I know it’s coming from a very human place, but it still feels a little sick.

So, my not wanting to create my own campaign had little to do with a reluctance to ask for help. I’ve asked for support in many ways as we have gone through this trial. It felt like that particular kind of assistance was not free, as though online fundraising was a transaction in which people could buy glimpses of my family’s most vulnerable and painful days.

I thought that inviting people to contribute would be akin to saying, “Look at our pain and our fear! Relieve our suffering with your hard-earned money.” And when the donations slow down? Post an update, of course! Tell everyone how poorly an echocardiogram went, or how my mom’s airways were so diseased that they cracked open and allowed air to seep into her body.

Those details did not feel like the currency with which I should bargain for funds from my internet pals.

Social media shapes our world more than I care to think about. We might have missed out on “free” money, but my family maintained our privacy. It was liberating to set that boundary and deny social media power — to know that only those we chose to tell know what happened.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.