How to Deal With Us


1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen; it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge ( place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

deleted deleted
11 Responses Sep 26, 2008

I agree 100% thanks

I agree 100%, I have all of the above.

Reading your words was THE best medicine I have taken in a very long time....(I am 18 years with living with chronic pain).<br />
To see you words ....<br />
To feel your words...<br />
Finally someone who understands.

I read this and cried. Then I made it a note on my Facebook.

I don't speak often of this, the majority of people do not understand.................<br />
I find it is easier and simpler to keep it inside.<br />
<br />
For over 20 years, I have not had a day without pain..............<br />
as you know, some days better than others, some worse. <br />
<br />
Recently, I have suffered a re-injury, and full blown pain has become my daily companion again.<br />
<br />
Dear deleted - <br />
Thank you so much for expressing in words what I cannot..............

I also cried, not because I have pain and can say I truly understand but I live with and try to care for my dad who has chronic nerve pain, muscle spasms, and headaches. I know these things are all very true and I try to keep them in mind when I deal with my dad. Sometimes he can seem so well and others I'm scared he'll bite my head off if I say the wrong things. I try very hard not to take things personally but the one thing that struck me most is the unreliability. My dad's pain started when I was younger and that is probably the thing that has affected me most. I wish I knew all these things back then when I was really hurt and felt betrayed by him. I love my dad so much though that I am willing to perservere through all his tough times if only to help make his life a little better.

I can not believe how perfectly you put our lives. I can't wait to show this to my husband, who has a hard time undestanding the pain and my reactions to him while the pain is the most intense. Thankyou so much.

wow!!!!Everything you wrote is amazingly true!!!I cried reading the whole thing. I feel so sad, but I will just focus on being grateful instead. Thanks for the letter.(It's like someone read my mind)blessings to you Marino

awesome! absolutely, awesome!<br />
<br />
Thank You so much!

Sweetie, you say that so well. So many people just don't get it if they can't see it. And then not even have a name for the early 90's when I was finally diagnosed with ep stein barr virus and Hep C, people still thought I was faking it. Sorry, I could go on and on about the difficulties of dealing with other people, but instead I'll make a copy of this and give it to my loved ones. Thanks Sweetie.

Sadly... I know most of these are true for me. :/