The Secret Suffering Society

Living with a chronic illness often feels incredibly isolating. Watching others go about their seemingly ordinary lives can make it seem like you’re the only one suffering. However, this sense of isolation is often self-imposed. In reality, most people we encounter each day are suffering, some in ways surprisingly similar to our own.

Recently, I started reading Ross Douthat’s book, “The Deep Places: A Memoir of Illness and Discovery.” Douthat describes his immensely difficult struggle with Lyme Disease. While our medical challenges are different, there are many parallels in our experiences: his world crashing down as he went from perfectly healthy to incapacitated, endless doctor visits, and being passed around the medical community trying to diagnose his symptoms. Like me, he faced quiet suggestions from doctors, friends, and family that maybe it was all in his head.

I’m only halfway through the book, but this passage stood out to me, and I wanted to share some thoughts on it:

“The only place to turn for real solidarity was the secret fraternity into which I had been initiated—not just Lyme patients, but the much larger group to whom a confession of chronic illness (and as I said, I confessed my situation to everybody) opened up. In my wanderings for work, in my visits to greenrooms and radio studios, in chance encounters and long online conversations, I constantly proved the truth of Scott Alexander’s observation: There was extraordinary suffering everywhere, people dealing with pain of every variety, with conditions diagnosable and not, that had been largely invisible to me until I came into the country, cleared the filter, and experienced that misery myself.”

Living with a chronic illness, whatever it is, makes you a card-carrying member of a secret society, an exclusive club. At first, you think you’re the only member, but everyone gradually realizes how massive the club actually is. This membership gives you access to a side of people the rest of the world doesn’t easily see.

If your chronic illness is invisible (as it is for me and Ross Douthat), you can only meet other members of this club if you show your card. How do you do this? You have to be vulnerable and open about your own suffering to connect with other members.

For Ross, this was never a problem. He describes how he was obsessed with his illness and couldn’t stop talking about it. Especially when struggling to find a diagnosis, he would talk to people everywhere he went, hoping to find parallels and answers.

My experience has been different. Probably because my chronic pain started when I was a teenager, I’ve been much more hesitant to share it with others. All I wanted in high school and college was to be normal, to fit in! I’d hide my chronic pain, often not telling new friends about it until awkwardly late into our friendship. I must confess I still do this sometimes.

However, I’m slowly starting to feel more comfortable flashing my chronic pain card. I’ll casually mention it in conversation, sometimes as simply as, “I’ve been dealing with back issues since I was a teenager.” It feels intense to drop the whole, “I’ve been in intense chronic pain every single day for the past 17 years” on someone I’ve just met, but occasionally I will. I’m still trying to find a middle ground: a way to indicate the severity of my suffering without eliciting pity (something I dread).

I remember posting a casual remark on social media marking 15 years of chronic back pain, and someone from high school I had completely lost touch with reached out to me. She had been suffering with intense back pain for the past five years and had similarly gone from doctor to doctor unsuccessfully trying to diagnose its source. Our stories certainly had parallels, but I couldn’t give her any concrete answers. Instead, all I could offer was an empathetic, “I know, doesn’t it suck?” Sometimes that’s all a person needs to hear to feel validated in their pain. We’ve kept in touch and continue to be a source of encouragement to each other.

Close friends and family members of someone with a chronic illness can be honorary members of our secret club. I remember immediately bonding with a professor in graduate school because his daughter had experienced extreme pain for over two years in her abdomen that doctors couldn’t diagnose. His anguish as a parent was palpable and reminded me of my parents’ own suffering as they’ve watched me in pain. I established a connection with this professor that went far beyond a simple classroom relationship. Our shared experiences with chronic illnesses helped us build a lasting relationship that has remained strong long after I graduated.

If you’re a member of this club, you know how tempting it is to be ashamed of it. We often hope no one will find out because we don’t want to be pitied or treated differently.

It’s time to start wearing your membership card like a badge of honor! This doesn’t mean obsessively talking about your chronic pain or suffering in every conversation. It does mean looking for opportunities to casually mention it. Other members of the club are often just as hesitant or ashamed to talk about their chronic pain, so you have to be the one to be vulnerable first.

Over the past few years, I’ve realized how selfish it was to keep my story of chronic pain to myself and pretend to be “normal.”

By being open about our suffering, we not only validate our own experiences, but we also offer a lifeline to those who might feel just as isolated and misunderstood as we do.

All around us, there are fellow pilgrims walking their own Pilgrimage of Pain. It’s an enormous privilege to encounter people on this journey and be able to empathize with them in ways that their friends and family can only sympathize.