By Jenni Grover Prokopy
As a pain ambassador and advocate for pain patients, I’m comfortable talking to new people about my pain story—I’ve got it down to a two-line elevator speech (a “mini pain story”). When someone asks what I do for a living, or what chronic illness I have, I say something like this:
“I’m a writer, and I focus my work on advocacy for people with chronic pain and illness. As someone who has fibromyalgia and a bunch of other chronic conditions, I know how important it is to educate the public and support my community—and the work is really rewarding.”
Not what you expected?
Most people, when asked about their chronic pain or illness, launch into a list of ailments, symptoms, and challenges. I don’t blame them! Life in our shoes is difficult and isolating, so any chance we have to connect with people, we want to take.
But sometimes we overdo it and overwhelm people. That cashier who asks “how are you?” at the checkout has already asked 50 people the same question that day, and doesn’t have time to get into a long conversation—she’s being polite. That friend of a friend you meet at brunch who asks “what do you do?” has no idea you’ve been unemployed because of a series of gruesome surgeries; if you start sharing the whole story, she may lose her appetite.
That’s why I’ve got my “mini pain story.” I’m not hiding anything; I’m not shying away from reality. But I’m starting the conversation in a way that opens the door for folks to ask more questions, or for them to move along if they’re not interested.
It’s not that people don’t care; many people do care, and want to hear your story. But timing is everything. If we want to make more friends; find love; and inspire change in our society, we need to learn how and when to open up.
If you’ve never written an elevator speech before, the concept is pretty simple: Imagine the amount of time you might spend with a stranger in an elevator—15 seconds? maybe 30?—and aim for that. You want to be clear, concise, and offer one or two main facts. You want to make a good impression, so don’t focus only on your pain; put it in context.
Using my example, you can see it’s short and to the point. I don’t list the 10 chronic conditions I have; I mention the biggest (fibromyalgia), the condition I most want to educate people about. I share its impact on my life (I’ve become an advocate). And I stress the importance and rewarding nature of the work, two qualities that draw people in.
Try writing yours out and practice saying it out loud. Try saying it to your best friend, your pastor, your mom. Gauge their reactions and refine your message. Once you’re comfortable saying it, practice it. The more you repeat it, the easier it will be to remember when you’re in the moment.
You’ve got your “mini pain story” refined and you’re ready to talk. But when’s the right time to start a conversation with someone?
Close friends and family
This one’s a gimme, really. I hope your close friends and family already know what’s going on with you—but if they don’t, start by making a phone date to catch up, and try your elevator speech on them. Make it clear you’re available to answer any questions they have. Offer a couple websites they might want to check out. Ask for support. And ask how they are doing.
Co-workers and acquaintances
Workplace conversations are more challenging and demand caution. I recommend Rosalind Joffe’s terrific blog, where she addresses workplace legal and HR concerns. In general, if a co-worker asks how you are, a one-line explanation should suffice. They don’t need to know every gory detail. Remember: you’re never obligated to talk about your pain at work.
Meeting new people and acquaintances is a fantastic chance to try out your “mini pain story.” Some people will respond with questions that evolve into deeper conversation—cool! Some people will move along for whatever reason, and I encourage you to not take it personally—some folks just aren’t comfortable talking about health issues.
Sometimes, I choose not to offer any info to strangers (like at the grocery store checkout) because there either won’t be time to talk, or I have no idea what their interest is, or I just don’t feel like talking about my pain that day. But some days, if a stranger asks how I’m doing, I take the opportunity to practice my “mini pain story.” You never know who will relate and share their pain story with you—and now you’re not strangers.
Policy makers and legislators
If you’re eager to exercise your advocacy muscles, consider reaching out to your representatives to discuss pain-related legislation. The State Pain Policy Advocacy Network can get you up to speed on issues in your area, and put you in contact with the right people.
Write out your “mini pain story” and your specific request (“I ask you to support House Bill X”) in advance, and start dialing. Most of the time, you’ll reach an aide, who will take down your information. Sometimes, a legislator will call you back and you’ll have the chance to elaborate. Be brief, concise, and specific—and thank them for listening.
The long-term impact of your story
Over time—as you get more and more comfortable using your “mini pain story” as a jumping-off point for conversations—you will see your relationships evolve. You’ll meet fellow pain patients and form bonds. You’ll turn acquaintances into allies for our cause. You’ll influence legislation that helps our community.
You can do all this, just by starting with a few simple sentences.
Jenni Grover Prokopy founded ChronicBabe.com in 2005 and has been a boisterous advocate for people with chronic pain and illness ever since. A professional speaker and writer with more than 25 years of experience, Jenni believes all people have a story worth telling. She lives in Chicago with her fiancée, Joe, and enjoys gardening, quilting, and five-minute dance parties in her living room. She is also a pain ambassador for the US Pain Foundation.