How Do You Describe Your Pain – the short version

How Do You Describe Your Pain – the short version

I spent Saturday in Dallas and had the honor to interact with about two dozen up and coming patient advocates for chronic pain.

It was part of the U.S. Pain Foundation Pain Ambassador Advocacy Summit. We’ll write more on it later in the week.

What was interesting to me was a question and answer segment where we discussed the best ways to describe your chronic pain—in this case to a potential elected official, public policy expert or reporter—none of whom is familiar with chronic pain.

And how do you do it efficiently?

I have the privilege to communicate with many chronic pain patients through the course of this work with the National Pain Report—-and many of you are frustrated because “people just don’t get it”..sometimes even your own family members and your employers are among those who you believe need more education.

And if your family members and employers don’t “get it”, how the hell will an elected official, a policy maker, an employer understand?

The truth is you can almost see their eyes glaze over, right? And the more you talk, the faster they glaze!

The Brits have a word for it: “chunter” which means to talk for a long time about something that other people do not find interesting.

So how can you make your chronic pain interesting and important to people who don’t have it.

In the course of our discussions over the weekend, we came up with an interesting drill—how to quickly engage someone on the issue of chronic pain who doesn’t know anything about it.

How can you make them “feel your pain”?

In speech making, it’s called the attention getter. In media training, I talk about a mythical radio station WIII-FM—which stands for “What’s in It for Me?”

If your audience cares, you can reach them. If they don’t, you won’t.

So, here’s the drill. Imagine you are talking with a policy maker, an employer, or even a family member.

How would you describe your pain?

How do you do it in two sentences?

We ask that you go to our commentary section and describe your pain and why someone you talk with you should care about it.

Do it in two short sentences.

(Some of you I predict will hate this and tell me it’s a stupid idea—well it won’t be my last one).

We’ll publish the best ones because the ability to communicate chronic pain isn’t how long you talk about it; it’s how well you talk about it.

And someone else’s words might help you in the future when you’re talking about chronic pain.

Fire Away.

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Authored by: Ed Coghlan

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Phyllis Martino

Here’s my 2 sentences:
Because I have chosen to not become an invalid dealing with daily pain on the 6-8 level, I have also made the choice to put makeup on and do my hair every day. While describing my symptoms, I have often gotten “the look” from the doctor which says “she looks too good to be in that much pain, she’s just looking for drugs “.

Nickie Royse

I was going to try to describe my pain in two sentences as asked. But after reading all of your comments, every single thing I could possibly think of to say has been said and only left me more angry because so many of us are suffering so needlessly. This is just insanity. And for what?!?
So I am simply going to rant for a sec here instead.
I would like to have a short discussion with Mr. Jeff “Take an aspirin” Sessions right after a blow torch has been applied to his ass for a minute or so, and see how that aspirin is working for him…. Any takers?

Diane

I feel like a mack truck hit me every morning and my back has a hot metal poker sticking through it! Is that enough?

Amy Upton

My pain comes from many areas, head, neck, left shoulder/arm/fingers, low back, hips, sacroiliac jointbuttocks and legs! I have enough pain on a regular basis that I lost my job and now take pain medications on a daily basis that allow me to barely take care my activities of daily living on good days. On bad days I cannot even shower or do my dishes rtc!!!

Sharon Lynn

My spinal column and back feels like a bomb exploded and I constantly feel the shrapnel from herniated discs (L4 – L5 is close to compressing my spinal column), bone spurs, arthritis and a 2 cm stone embedding my left kidney. I’ve already had 2 cervical spine surgeries and like everyone else, I’m left to my own devices when it comes to treating my pain. I am at an extreme low period in my life wondering why in the hell am I even here! What I want others to know is THIS COULD HAPPEN TO YOU, or someone you love! I’ve lost desire for me to keep trying, but what gets me up is my dogs! I WONT allow them to need anything no matter how awful I feel!

Don Prue

I didn’t know what it felt like to lose your father until I lost mine at the critical learning point of a 12 year old. I heard about it. I knew people who had lost their dad, but never really understood the pain until my dad suddenly and unexpectedly died.
Same goes with pain. I can explain, describe, make a graph, draw a picture and introduce you to a room full of people suffering from chronic pain but you’ll never realize how much it hurts and how affects your entire world until you experience it.
I can’t understand your pain and you can’t understand my pain until we have experienced it or worse.
Sometimes you just have to believe people until you can develop a method of providing scientific evidence to the contrary.

Mike Ellery

Thank you “Jen” for saying it all! You are perfect in your description and the timing is right.The “doctors” can be cowards and not stand up for their patients but chronic pain patients must be brave and be undertreated.The pill pushing pharmacists can call us addicts but we must be ashamed and take the insults along with untreated pain.The media can pump out stories about the opioid epidemic and we must accept it and not disagree…..on and on it goes.I dont accept this [edit]. The dea(small case deserved)could not find a light switch in a lighted room but sure as hell could find my doctors office and scare the crap out of him.I am ashamed of this horrible mess as an American and will fight to the end.Im a veteran and when i hear someone thank me for my service,i say nothing.If you want to thank someone,thank a living,fighting chronic pain patient for the courage to stay alive in spite of the hell they are forced to live in.And say a prayer for those who could no longer stand it.Again,i am ASHAMED!

Denise Morris

A Cholla cactus
is my attacker – or has
it become my spine.

(Thank you Ed Coghlan for providing this forum. And to each person who comments
here, I wish a better life.)

Linda Marie

I would describe my pain as life altering and incapacitating.For some reason they rate cancer pain as worse pain. Pain is pain and pain from my sciatica, is just as painful as pain from the cancer and i have had both

Gail Honadle

Depends on things like weather, and where it’s located. FMS muscle pain is not the same as the Gastropresis pain, or the Rotator Cuff Thick tare that involves the whole arm including the shoulder blade. Spinal Degeneration is the worst as it effects my ability to walk. BP headaches is another story.

Lisa

It’s a very big,strong man with a sledgehammer hitting my buttocks Nonstop, with the pain going down to my ankle, then the hot knife stabbing into my sacrile joints and up my low back. Then it skips into the Cervical spine. Feeling like the bones are going to be snapped in half, oh if I can only get them to pop and release some tension! And the pressure on the bottom of the skull. Always a headache going.
It’s hour after hour, day after day, Never ending, energy draining, mind clouding intense, complicated , complex pain .

Robert Seylhouwer

My pain is what drives every other thought of anything in the universe out of my mind. If my house was on fire, my thoughts would be “can I take the pain to move or should I wait for help”.

Tracie Lundy

Image your legs throbbing like a toothache 24/7
Image your legs feeling like they are burning 24/7
Welcome to RSD/CRPS!
The Burning Pain the NEVER Goes Away!

Mark Nawrot

I told my dr,,, fill a small foot soaking tub with ice water,,, mostly ice, and but your feet in it for 20 min,,, and no matter how much it hurts, don t take yiur feet out! That is what my neuropathy pain feels like when its going strong! I ve asked her on subsequent visits,,, did you soak yiur feet yet? I just get ignored.

Laurie

30 years of fighting for control of my high pain with a little-known genetic disorder.
Doctors don’t listen to women in pain. Now, they won’t help us at all…with anything that helps

Don Prue

I never knew what it was like to lose your dad until I experienced it. I knew people who’s father died. I heard people speak about it. I saw movies about it and I prayed for them sincerely feeling like I understood…and then, suddenly and unexpectedly, I found myself looking at my dead father lying on the couch. Nothing nor anyone could have described the heartache I felt that changed the course of my life.
That is the best I can describe pain that never goes away no matter how much I ‘suck-it-up’ or try to ignore it.
The only thing that made it harder to deal with is when people at the funeral said ‘I know how it feels ‘ or it will get better.
SAM WITH CHRONIC PAIN.

Joseph Lane

My undertreated diseases have robbed me of the ability to work or be productive in anyway. All we want is the ability to be productive at our work and social environment, none of us want to be a burden.

Cindy too

Reply to Weston:

If your chronic pain is only at the level of what you’d need an ibuprofen for if it were not chronic, then I think you are incredibly lucky and I think all other CPP’s here would agree.

I’m not dismissing your pain, and I’m sure that even lower level chronic pain has a cumulative effect, but what people here post about is agonizing pain that even if it were short term, would require a lot more than an ibuprofen.

Which is why people cut off from meds commit suicide, or at least contemplate it like I did during my forced taper.

And, before our pain became chronic, it was not. Mine began after a surgery. I needed opioids then, and still do, 11 years later. Even a lot of ibuprofen never helped at all.

ElizabethR

Long-term pain that is un- or under-treated:
1) Trashes your life and never leaves.
2) Hits the delete key on joy.
3) Sends older adults to expensive long term care facilities, often at taxpayer expense.
4) Causes people to research end-of-life options more closely!

Barbara Caldwell

Two sentences:
For men. My pain is like being kicked in the testicles every 15 minutes.
For women: My pain is like a neverending mammogram while getting my teeth drilled unanesthetized.

JPotter

I have two children who live with chronic pain. Here is the response from my 19-year-old: “The reality is, I can’t adequately explain my pain in a way that someone else will truly understand. The best I can do is to try and hope they are empathetic. I mean that’s the reality. The burden shouldn’t be on the ill person to do whatever they can to make others understand/believe.”

Lee

When i was young with hopes and dream before me with little regard to others that were in agonizing pain. How could i know i was young healthy and strong and a career ahead of me but now I’m one of those other people, oh i wish i would have seen there agony.

Eddy

Imagine angry bees under your skin stinging, electricity zapping throughout your body, relentless burning pain.

Weston

Imagine the aches and pains you pop an Ibuprofen for here and there on occasion. Now imagine if that never ended.

As a general practitioner, I advise my patients with this kind of pain to show to their relatives (family, friends, colleagues) the 5 minutes animated video on dysfunctional and neuropathic pain from the home page of the MyMedicoach.com website. Chronic pain often has dysfunctional and/or neuropathic components. It’s in french but the automatic translator of the subtitles is quite ok. We are short petrol for the voice over in english. Courage to all of you.

THE DEA, CDC, INHUMANE DOCTORS, PHARMACISTS etc. NEED TO BE HELD RESPONSIBLE FOR SUICIDES OF CHRONIC PAIN PATIENTS THAT HAVE BEEN FORCED TO STREET DRUGS FOR RELIEF BECAUSE FOR MANY SPIRITUAL/ RELIGION IS THE ONLY THING STOPPING PEOPLE FROM SUICIDE.
THEY NEED TO KNOW THEY ARE RESPONSIBLE FOR THESE DEATHS!!!
STOP BEGGING FOR HELP AND START STATING THE FACT THAT THEY ARE “RESPONSIBLE FOR THESE DEATHS.
THEY DO NOT NEED OR CARE TO KNOW ABOUT HOW PAIN FEELS BECAUSE THEY LIVE IN THEIR SELF MADE BUBBLES AND HAVE ACCESS TO THE PAIN MEDS. WE ARE BEING DENIED.
BOMBARD THEM WITH THE “TRUTH”!!!!!!!!!!!!!!!!!!!!!!!!! THEY CANNOT STOP ILLEGAL DRUGS, THEY NEVER COULD AND TO KEEP THEIR JOBS, TO PACIFY THEIR BOSS. THEY NEED A SCAPEGOAT ………YOU, I AND DOCTORS ARE THOSE SCAPEGOATS AND IT NEEDS TO BE SCREAMED FROM EVERY PATIENT, FAMILY/FRIENDS …OR WE WILL NEVER, NEVER BE HEARD. THEY ARE DESTROYING LIVES TO COVER THEMSELVES AND WE HAVE DONE NOTHING BUT FIGHT FOR OUR VERY LIVES WITH CRIES, PLEADING AND FEATHER SWORDS.
WAKE UP!…WAKE UP!!!!!!

Beth

I am at home watching my life go on without me. But my pain will never leave. It is the crusader for everything I cannot do. All I want to do is play with my new Granddaughter, but that has been taken away from me by people I don’t even know. Help me be me again. My family needs me. And I need them. God Help us all.

Ellen Lenox Smith

My pain lives in me is constantly knocking on the door to remind me it is in my life. My goal is to not be defined by the knawing reminder it is there

Barbara H

Chronically Tormented daily no cure insight

Kathy Spain

My pain makes me think asking someone to slowly drive over my legs with a golf cart would make it feel better. Or that taking a knife and stabbing my leg would stop the pain and distract me temporarily.

dis may

As hunter gatherers, chronic pain serves the opposite evolutionary goal of acute pain. Acute pain warns and demands protection for the organism still essentially sound and capable of serving the social group. Chronic pain serves to kill the organism with an incurable affliction to prevent waste of vital resources. Evolutionary economy out of date.

Laurie S

My approach would be to kindly ask if they have ever had a pain event in their life, e.g. toothache, blisters, sunburn, broken bone, etc. and if they’ve never had anything, well, God bless them, but I truly believe almost everyone has had ‘something’ even if it was a skinned knee. Assuming there will be a ‘yes’ I’d then ask how relieved they were when the pain let up? Again, assuming the answer will be ‘relieved’, ‘great’, etc., I’d then say I’m truly happy for you, but for me I don’t have that luxury any longer since losing my pain meds to feel relief. It’s intense head and neck pain 24/7.

Dear Mr. Coghlan, you have an excellent point. Thank you so much for all that you do. I am curious about the answers for the to short sentences. I believe the Physicians have turned off their ears on any conversation that has indications of pain. Again thank you

Janna Crickmore

My joint pain feels like a cattle prod on a pulse setting making it impossible to find a position that makes it stop, ever. My restless leg syndrome pain feels like someone is twisting and tearing my calf muscles, I want to squeeze them off, on repeat like a broken record every single evening or whenever I am forced to sit for any extended time

Sarah

My pain is like an electrified ice pick stabbing through my back, non stop. You should care because one day, pain will happen to you, your child, your mother, or your husband.

Jan

Burning acid poured on legs/feet like you’ve been stuck in boiling water like a lobster whose screams you can’t hear!

Hurt

I have had chronic pain in my spine for about 30 yrs. I say it feels like a really bad tooth ache in my spine.

1. When I was a kid the car door got slammed shut on my fingers. This pain is like that, except that nobody comes to open the door.
2. This pain is like childbirth, but when it finally lets up, you don’t even have a baby to show for it, and you know it’s gonna hurt the exact same way tomorrow. And the next day, and the next…

Jamie

My pain is life altering and potentially life ending. If you care abt human life at all youd make sure I was properly treated.

David Hickle

How I describe my pain in 4 words hell and a living breathing nightmare an parolising crippling

American

Too much pain atm to give a honest answer and it has stolen my creativity to do so plus I generally don’t care anymore because I hurt to much to bother and I sure wish I didn’t have to feel this way and I know it doesn’t have to be this way these are the results of the unintended consequences of the CDC guidelines and forced tapering.

Judy Jaeger

Chronic low back pain is like leaning against a wall with shards of broken glass stabbing me.
It’s never ending….24/7/365 for over 20 years.

Jill

I think the hardest concept for others to understand is the unrelenting day, after day, year after year of pain. We are told to push through it. That is harder as the years go on with no relief, no hope. Certainly it was easier year one then year 35. Pain is so bad, the fatigue is overwhelming. Family and friends will tell me the stupidest, most simplistic advice as if I’m an idiot who hasn’t spent my whole adult life trying everything for just ONE day of relief. Seriously, unless you walk in my shoes….

Gina

In his first sentence, Robert stated something very similar to what I tell people…”Think about and imagine the worst pain you’ve ever felt. Now think about feeling it 24/7 for YEARS!”

henry dunn

Best described: Dee Dee, Churps57, Victoria White, Jeannie Misner. What could I add to those eloquent vivid accounts. These made my chronic headache pain seem less significant, (though no less pressing). Well said to all! May we all find relief someday soon. Elections matter.!

Nadine Malone

Imagine Pain that radiates through your body and sends signals making the decisions of where you will hurt today. Feeling defeated when you aim to get better but the illness holds you down.

Lynda

This is hard to do in 2 sentences, but I will try. Great exercise! Even therapeutic & will get someone to get you.

When asked how I’m feeling by those who actually care, I reply:

Remember that intense pain you felt (when whatever caused it, i.e. an accident, prolonged labor, blinding headache, trauma, having the [edit] beat out of you, etc) happened? That pain is my everyday life!

Or

I have disgusting GI issues. I can’t think straight, or see straight or remember events or words without taking the prescribed minimum amount of pain medicine & even then, I suffer invisibly!

Or

I’m not sure I want to be here anymore. The pain is so very intense, disabling & relentless.

Or

I took good health & a pain free life for granted. I don’t do that anymore,

Or

I’m so grateful that you don’t understand my pain. I wouldn’t wish this on my worst enemy.

Or

God has me here for a reason. Otherwise, I know I wouldn’t be, because, the pain is that bad.

Everyone wants to be in pain, right? I have lots of different kinds, I would be willing to share.

That’s enough, I’ll let others try.

Cher

I read many years ago, when explaining to your Dr etc.. about your bad pain, is to give some visualizations. I often even forget to do it. An example would be, ” Oh my god, I was crying and laying in bed all weekend & Monday with my ice & heating pad, with constant knife stabbing in lower back & I slept 4 hours the entire weekend. I took my low dose of pain meds, but they did not help my severe pain in my back. I had to miss my Aunts birthday party & wasn’t even up to watching the Clemson game on TV.” This is just an example. I’m sure many of you have more stories, but my Dr does feel badly when I miss family stuff a lot, which I do.

Adam Selene

I would describe my pain as an severe burn mixed with sharp spikes of electrical shock which increases with movement. The burn is comparable to holding my arm in front of a propane burner flame and the sharp spikes are like being stabbed by an ice pick.

Carole

Use the words doctors use. Sharp dull throbbing electric achy, radiating constant intermittent better with this worse with that