How can others understand your chronic pain?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 2/27/2010 2:59 PM (GMT -6)   
Please read forum rules before posting. All research questions must go through the forum administrator.


Post Edited By Moderator (Chutz) : 2/27/2010 4:21:20 PM (GMT-7)

Regular Member

Date Joined Feb 2010
Total Posts : 358
   Posted 2/27/2010 5:58 PM (GMT -6)   
This is the way I've heard it put and my husband even tried it. Clamp a clothes pin on your finger. Keep it there as you try to cook, clean, go to work, just keep it there. You will find that all you can think about is how badly your finger hurts and luckily for you, you can take the clothes pin off. My husband lasted 20 minutes and from what I understand about this little experiment, he is about average. WE can't take it off! There is a huge difference between a finger and for me, constant headaches that make me vomit, pain from my neck down to my lower back and sometimes all the way down my legs. My left arm is in such shape that I am no longer able to type 140 w.p.m., lift it to bathe, do my hair, put on clothes (my husband helps me), I haven't cooked a meal or cleaned a room in over a year. I can not put clothes in the wash nor switch them to the dryer anymore. Only someone with chronic pain could ever fully understand "how bad it is". My question would be, if you ever lived with someone with chronic pain, how well do you understand it? I feel so sad for my husband and children, they didn't sign up for this either.
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.

Regular Member

Date Joined Mar 2010
Total Posts : 39
   Posted 3/28/2010 12:54 PM (GMT -6)   
I would have loved to have read your entire question, but for unknown reasons it's being edited right now.  You did ask though how others can understand your pain.  May I ask you why is this important?
Everyone knows what pain is, so it's not that others don't know.  People don't know the kind of pain you're in, but why would you really need them to know, unless of course you think you're getting bad medical care or treatment or other people in your life are being rough on you because they don't understand.  People who don't understand what you're going through are only doing what most people do, relate only in a way  they've had first hand experience with.  Because you're suffering is probably worse than what they've ever gone through, they just can't get to the point of fully understanding and might never.  If it's your doctors who don't understand, that's a breakdown in communication that must be fixed.
When my cats talks to me in the morning, how do I know he's hungry or if he just wants some attention - experience.  The same goes with doctors, so I think most do understand on the whole.  Sadly though, because of there being just enough people out there who gripe about sunny days and who always know the end of the world is at hand, they do become a bit crusty over time.  It's not a lack of caring, it's just they already know.  If you think your doctor is not listening to you, you either have to change the way you're talking to him or find someone else who understands the way your expressing how you feel.
You don't need people to know your pain, you just need for them to understand you a little better.  Trust me, they are not one in the same, and that's a good thing.  Take care, Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.

New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 3/28/2010 3:24 PM (GMT -6)   
Hi Bob,
Thanks so much for your reply. The question was about some research I was carrying out about finding ways for all people to understand and respond to those suffering chronic pain.

I take on board your view that understand pain is all about understanding the person.

Thanks again,

Associate, Digital Engagement
Creation Healthcare

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 3/28/2010 7:29 PM (GMT -6)   
Have you tried to e-mail the administrator, Peter Waite, to get permission to post your study? That's why your post was edited. The forum rules don't permit research studies unless they've been approved by the admin.


Veteran Member

Date Joined Nov 2008
Total Posts : 1037
   Posted 3/29/2010 4:03 PM (GMT -6)   
I am curious about this research on how well others understand our can go to my profile and email me privately if you want to....
Here is what I think about what others percieve. 
People can only understand what they understand.  They know what a headache feels like, a stubbed toe, a burn, getting a finger caught in a door, and so on....but most people cannot understand what Chronic, neverending, constant pain actually feels like unless they too have been through it.  It's not that they don't care or can't's just that their brain can't comprehend it.  My own mother is so anti-drug (for anything) that she couldn't see how or why I would take the pain pills constantly...until she hurt her back.  That's what I say, when it happens to you then you will understand.  and she did.  kind of...she still won't take an advil unless she is writhing around in pain...and she will NEVER take narcotic pain killers for more then a couple of times. and that's only if she was dying....but she has a better understanding of me and my pain.
It's kind of odd to me...She has been here with me since the very first incident with my back way back when I was about 20...she was standing there when I went down and couldn't move for a few hours before I finally gave in and let her call an ambulance...she's been there through the times that I couldn't stand up straight for months...been there through all the procedures (ESI, Caudal blocks, Mri'S, mYELOGRAMS, PT) , through the surgeries (first a lamenectomy then Spinal Fusion)...she's seen me lay in bed for days when I ran out of pain pills early due to pain...and yet it took her own incident with back pain for her to have just a little bit of understanding about what I go through on a daily basis.  Why?  Why can't they just take it a face value?  Is it because it's easier to not think about it?  I don't know....but I'd sure like to know how to get others to be a bit more empathetic when they see me get out of my car in a handicap spot...and instead of mouthing off that I look like I need to park there in a sarcastic manner they would just keep it zipped....know what I mean?

I have been a spectator for so long..Now it's time to participate.......
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1700 mg. at night..Glipizide 10mg. 2X in the morning and bedtime
Lantus 50 units at bedtime with Solostar Pen
Byetta 5 mcg. 2X daily                                                                   


New Member

Date Joined Feb 2010
Total Posts : 3
   Posted 3/30/2010 4:13 AM (GMT -6)   
Hi Uniquelyme,

Thanks for your reply. It seems from what you say that empathy is hard to discover in others, unless they have had similar experiences, but people are more sympathetic to 'visible' disabilities.

I've finished the first phase of my research (for a healthcare consortium) and we're now looking at putting together an online campaign around raising awareness of chronic pain conditions. I'll post here when this progresses (3-6 months). You comments are very important in helping to develop this.

Associate, Digital Engagement
Creation Healthcare

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 3/31/2010 9:13 AM (GMT -6)   
Look up the word sympathy and then look up empathy, they are different! Pain is subjective, everyone feels it differently, and no one can feel pain exactly the way "YOU" feel it! That was why when I was in Nursing school that we were taught that pain is whatever the patient says it is! You have to take it, as the patient says it is for them! Nothing more and nothing less! You can not feel what your patient feels, so pain is what ever the person that is experiencing it says that it is! Some people can be in terrrific pain, and yet have a smile in their face! They try to hide and cover-up the pain that they are feeling, if it is a male, they might feel it might not be manly to show that they are in pain! What ever the reason, you just have to rely on what they are telling you! As a nurse you are not suppose to judge a patient, just report what you observe, and try to find out the patients condition! But that doesn't just apply to Doctors and Nurses or professional health care providers, it can apply to all of us! That is what makes this forum and its people so special, People here can for the most part honestly "Empathize" with you! at least a little! For the most part people here, don't have to try and understand what your feeling, they have experienced the same or similar thing that you have, and they know how it felt for them! So even though they can not feel your pain, they can "empathize" with you! It can make a world of difference! That is why we can say, that you are never alone when you come to this forum! We can and do in one way or the other, share in your pain and the burden that it puts on you!

I have rambled enough! smilewinkgrin

White Beard

Veteran Member

Date Joined Jun 2009
Total Posts : 974
   Posted 3/31/2010 11:58 AM (GMT -6)   
Kudo's WB. I think you pretty much hit the nail on the head.
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 1:06 PM (GMT -6)
There are a total of 3,005,143 posts in 329,198 threads.
View Active Threads

Who's Online
This forum has 161762 registered members. Please welcome our newest member, TruthSeekerSam.
299 Guest(s), 13 Registered Member(s) are currently online.  Details
notsosicklygirl, 81GyGuy, Kokopuff7, xpeetzax, MG0351, Bohemond, Anitas, Lymess, Girlie, Tudpock18, 61Impala, garyi, ltc1225