Talking About Pain:  The Way You Tell Your Story Can Make or Break Relationships

Talking About Pain: The Way You Tell Your Story Can Make or Break Relationships

By Jenni Grover Prokopy

jennicorporate.cropped

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.

The “how”

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.

The “When”

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.

Strangers

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.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Jenni Grover Prokopy

There are 10 comments for this article
  1. Sandra at 10:07 am

    Yes we keep paying their wages to do this to us.

  2. Maureen at 8:03 am

    Dear Wayne,
    I send my deepest sympathy about your stepdaughter. God bless you.
    Your point in your writing is well taken.
    Our suffering at their hands is barbaric.
    Hang in there, keep strong. Maureen

  3. In pain at 2:39 am

    To Wayne Swanson ll…I am so very sorry of your step daughter’s suicide…I too am a chronic Pain sufferer..and relate to your stories of chronic pain…we need to continue to fight not only to improve the attitudes of others,but for the next generation of people that will be suffering also!

  4. Emily Ullrich at 6:42 pm

    This is a GREAT story/suggestion. In film, there’s something called The Elavator Pitch, similar concept-pitch your film concept in the time you might have in an elevator with a film exec. People with pain do have a story they want (and need) to get across, but sometimes we need parameters! This is a terrific recipe for positivity in the trajectory of pain patients’ successful integration into the common American lexicon! P. S. I ADORE Chronic Babe!

  5. Cindy at 1:34 pm

    I have been trying for a wile to come up with a concise explanation of my pain and my life threw it. I want to be able to send it to legislatures… I would love to see an exmaple of what you did.
    Thanks,
    Cindy

  6. Maureen Muck at 1:12 pm

    Jenni, my grandfather felt as you do, that “how are you?” often equals “hello.” His answer summed it up beautifully. “I’m going along,” he would say. Most of those inquiring accepted that answer. Those who knew him on a more personal level would ask questions more related to him. Worked like a charm.
    BTW, he passed away at the age of 78, in the early ’70’s. He always was ahead of his time.

  7. Pamela Hansen at 9:24 am

    Hi I’m Pam,
    I agree with your telling us not to tell all our chronic pain to people. I myself most of the time I say fine and leave it at that a lot of people really don’t care I have found to be honest. Unless you talk with someone who has it themselves. My issue is Dr.s that either dont understand what we go through on a daily basis, or I had one Dr tell me its my marriage causing my pain which I was put on Lupron injections for Endrometriosis that was the start of my journey. I have gone down since that first shot 10yrs ago. I clam up because of all the stuff out their about fibro and its so not fair. I’m on disabilty because of it now. My pain is real and i’m so fed up. Their are so many who take their life because its messed up so many lives and familly’s with family that does not believe its real. I’m glad your fighting for all of us and I thank you from my heart. I wish we had more like you. Thank you Pam

  8. Maureen at 7:35 am

    Jenni, Thank you for writing on this subject. It is a tip we all need to learn.
    It is just fairly recently that I FINALLY got a big fat clue!
    For 25 years I have been known as ‘the person with the bad back’ ever since my 1st (of 4) spine surgeries…but after a traumatic auto accident in 2004 causing me to unfortunately become permanently disabled…my life turned upside down and so did my reasons for pain and therefore my ‘very complicated story’ began!
    I couldn’t even explain it all to myself! ha ha
    Yet…for all these years…I have tried to reel in anyone who would listen and show me compassion/empathy and 9/10x I would get the same negative response which would then cause emotional pain, over and over and over with loss of friends, family turning away etc. I finally got a clue! 🙂
    Now, instead of trying to tell my whole story (which scares the heck out of them!) along with also trying to explain the nerve damage/ symptoms/pain, medication side effects etc…. I just say ‘I have really bad arthritis in my back’. 🙂 Ha ha ha!
    For some reason…people can relate to that and be open to accepting me as ‘the person with the bad back’.
    Also, I don’t tell folks about my meds anymore… in order to avoid their judgements on that also.
    After all, ‘You look just fine’! You all know the drill…
    What they don’t know is that I don’t ever present myself to anyone during the darkest hours of my every day. And without my meds…they would NEVER see me!
    Keep up the good work! You are a shinging star on your website!

  9. HJ at 6:13 am

    Truth be told, I’m much more careful about mentioning anything about pain. For one thing, I’ve learned that people who don’t have pain also don’t understand. For another thing, telling strangers that you have pain may put you at risk for having your pain meds stolen.

    I had a neighbor who, digging through the outside trash bin, commented on what I put in my trash (female items) and food wastes (gee, if you dig through trash what do you expect? I worked on making my trash even more unappealing…). He was dealing drugs from his upstairs apartment. He’s gone now, but I never know if he’ll decide to come back and try to dig through my trash. What a wonderful way of visiting the old neighborhood.

    So yeah, I think we can make ourselves targets and we have to be careful who we tell what to. Besides, I wish that advocating on the street really accomplished something but I think it might get us into more trouble than we expect. Please be careful.

  10. Wayne S. Swanson II at 5:17 am

    I have taken this opportunity to share my heartbreaking story in hopes these witch hunting Opiate ill informed skeptics will read and understand that I would have no life without Medically prescribed Opiates by a physicians care and strictly monitored monthly urine and blood test. Please remember that An Opinion Before A Thorough Investigation Is The Epitome Of Ignorance! And that a little more compassion from the Medical Field and its representatives could have saved my beautiful Stepdaughters life. Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed with ouit pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on you! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to knew heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to out law Opiates and pain meds that give us some sort of a life . As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this 2016 Version of the ( 1940s Propaganda Film named REEFER MADNESS )movement to outlaw opiates! Just like the slaughter of children at Sandy Hook if there would have just been gun laws , my God they were Gun Laws , the guns that murdered all those 20 children were all registered and owned by a school teacher! You fight Drug Addiction in Elementary education by teaching all children the dangers of Booze and Tobacco which if these witch hunters want for us to know the real truth but they do not. I miss my Stepdaughter a so much and some of us will continue on the fight to protect our right to feel better and function without fear of these witch hunters trying to convince us to commit suicide . And they are trying to do exactly THAT!
    The under line real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it ( ALCOHOL) knowing its a more deadly drug than Strychnine. And just because the DEA has miserably failed with their witch hunt type movement on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain ! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.