By Kym McNicholas, CEO, The Global PAD Association
It started with a number. “What’s your pain on a scale from one to ten?” It’s the question every patient knows—and dreads. Because for people living with chronic pain, especially with peripheral artery disease (PAD), there is no number that fits.
That’s what our latest PAD Leg Saver Hotline Podcast revealed, in a conversation that wasn’t just about medicine—it was about humanity. I was joined by my co-host Douglas Salisbury, chairman of the PAD Warrior Task Force, and Alexis Robinson, a sociology major at Lycoming College who lives with chronic pancreatitis. She’s turning her own suffering into research—studying how patients describe pain and why doctors too often fail to hear what’s really being said.
And the metaphors poured out. “Being kicked by a mule.” “A rubber band pulled to the breaking point.” “Rumble strips on the highway.” “A vise tightening around your calf.” These became our shared vocabulary—a way to make the invisible visible. “Doctors need to hear that,” Alexis said. “Otherwise, they think you’re exaggerating. They don’t realize that for us, a pain level of six might mean we can’t even speak. We’re trying to survive it silently.”
That silence has a cost. “I can’t walk 25 feet,” said Marina, one of our PAD Warriors. “Before last October, I could stop for thirty seconds, then keep going. Now, it’s crippling. We don’t do anything anymore.” There was no self-pity in her voice—just exhaustion. Her husband, she said, “is very patient. He knows I’m in pain. He sees I can’t continue.” Then, softly, “I tell him, ‘Go without me.’ Because I can’t walk. I stopped doing anything.” It’s not just the body that stops moving. The whole life does.
Every patient has their story of being dismissed. Thomas had his. “My doctor looked at me and said, ‘You just need to suck it up, buttercup.’ So next time I saw him, I said, ‘I’m sucking it up, buttercup.’ Then I found a new doctor.” The room laughed for a moment, but it was the kind of laughter that comes from recognition, not humor. We’ve all heard it before—the disbelief, the minimization. Alexis nodded. “When I asked doctors what they do when a patient says their pain is a ten,” she said, “most told me, ‘We send them to the ER.’” But at the ER, she added, “the assumptions start—‘drug-seeking, dramatic, alcoholic.’ That’s not care. That’s dismissal.”
It reminded me of a wife who once called our PAD Leg Saver Hotline. Her husband couldn’t lie flat—the moment he did, charley horses seized his legs and his toes turned pale. But when the doctor asked, “Do you get charley horses?” he said, “No.” What the doctor didn’t ask was, “Do you get them when you lie down?” He didn’t, because he never lay down anymore. That small gap—the missing context—can mean the difference between recognition and misdiagnosis, between getting help and being sent home.
It’s a reminder that communication breaks down on both sides. Doctors often don’t ask the right questions, and patients—exhausted, scared, or conditioned not to complain—stop offering the full story. Pain doesn’t just change the body; it changes the language we use. “I tell my husband, ‘Don’t talk to me,’” Marina said. “I just need to sit. I turn into a different person.” For many PAD patients, pain isn’t an episode—it’s a presence. It shapes relationships, erodes patience, isolates. “It’s not that we don’t want help,” Douglas said. “It’s that after a while, you stop believing help exists.” Alexis understood. “Doctors say, ‘We can’t do anything for that kind of pain,’” she said. “So they look away. But what patients need isn’t always a fix. Sometimes, we just need them to listen differently.”
Douglas leaned forward, his voice steady but weighted. “If doctors could feel this pain for twenty-four hours,” he said, “they’d never ask for a number again.” The room fell quiet. You could feel everyone imagining it—the tightness, the burning, the relentless fatigue that never quite leaves.
PAD pain is cruelly complex. The very act that hurts—walking—is also what heals. Every painful step helps form new collateral vessels that restore blood flow. Yet telling someone, “Just walk through it,” without understanding what that actually feels like, is like saying, “Breathe through drowning.” It’s not that patients don’t want to walk; it’s that they want doctors to understand what they’re asking of them when they say it—to offer compassion, context, and empathy along the way.
That’s why numbers don’t do justice to this kind of pain. Descriptions do. As one patient told us, “It’s like having a tourniquet tied around your leg all day—and then being told to get up and walk.” That image says more than any scale ever could.
Every story that surfaced that day carried the same undercurrent: the emotional calculus of survival. How far can I push before collapsing? How much can I share before sounding dramatic? How do I convince a doctor that this time is worse than last time? “I’ve seen doctors look away,” I told Alexis. “Not because they don’t care, but because they don’t know what to do.” She nodded. “Exactly. When I go to grad school, I want to study their side, too—how doctors process what they hear, what they fear, and what they avoid.” Pain, it turns out, is a two-way failure of language—and both sides are suffering for it.
What struck me most that day wasn’t the metaphors or even the science. It was the shame. The learned habit of minimizing. The need to sound credible while describing something that can never be neatly explained. “Sometimes I think we’re trained to understate it,” Douglas said. “Because if you say ten, they stop listening. They think you’re exaggerating.” That’s why Alexis’s work matters so much. It gives patients permission to tell the truth—to use their full vocabulary. To say, “It feels like fire,” “Like my leg will explode,” “Like someone poured cement into my veins.” Pain doesn’t have to sound polite to be real.
Toward the end, Jim, another PAD Warrior, spoke softly, bridging everything we’d discussed. “I lost my wife to cancer,” he said. “I saw what she went through—the morphine, the grimaces, the exhaustion. I could see her pain, but I couldn’t feel it. I’ll never know how bad it really was. That’s why I think we have to find something to compare it to—some way to help others picture what we feel.” The room went quiet. His words reminded us that empathy doesn’t require shared experience—only imagination and intention.
By the end, Alexis summed it up perfectly: “We don’t need a better number. We need better questions.” Her research will continue—first with patients, then with physicians—to build a shared language that replaces the cold precision of scales with the warmth of understanding. I left that discussion with a mix of sadness, solidarity, and hope. Because even when pain can’t be fixed, being heard changes everything.
If you’re living with PAD, you’re not alone. Call our Leg Saver Hotline at 1-833-PAD-LEGS or visit padhelp.org to connect with someone who understands. And join our growing community of PAD Warriors at facebook.com/groups/peripheralarterialdisease. Together, we can rewrite how the world understands pain—one story, one patient, one heartbeat at a time.
📩 Learn how to participate in Alexis anonymous research survey by reaching out through the Global PAD Association or you can participate directly through this link: https://forms.cloud.microsoft/r/KCfE8pKCnf
🎧 Watch or listen to the full discussion in the video at the top of this post.
💬 Share your story or thoughts in the comments—every voice matters.