One of my old classmates got stung by a hornet. There was a picture and it looked really bad: very red, very swollen, and painful.
He posted a picture at our high school group page, writing "Sure can not compare this to Carol's pain..."
I appreciated the nod, especially since people there had been mad at me because my posts from here automatically post at that site. (In a way it is appropriate, it is my status update after all) One person wrote he felt bad for me but seeing the posts and reading about my pain was getting "old". (I reminded them they could delete it and not read it, reading it was a choice.) It was a kindness to acknowledge my experience.
It reminded me of the other side of having chronic pain, the other side of "I don't believe you".
I know people, and I am sure I am not alone in this, who preface everything they say about how they feel with, "I know this is not as bad as your pain". Granted a cold, or a cut finger does not rise to the level of trigeminal neuralgia or CRPS, etc. but when it happens to you it is the worst pain, at least for the moment when and while it is happening, and for as long as the pain and discomfort lasts.
It is a strange road to travel.
People tend to be with chronic pain like they are with their political party, one side or the other. It is okay to accept the level of pain in which most who have chronic intractable pain live with, we revel in those that understand and believe; who do not argue with the truth of it. And most of us are not breakable china dolls. You can have pain from an injury, the bite of an animal or a bug, or feel miserable from a horrid cold or allergies. You can tell us how truly awful you feel without feeling saying so negates our pain.
We want you to understand us. We also want you to know we understand and feel your pain, no matter what it is from or how long it may last.
And to my schoolmate - feel better real soon.
My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.
My comment is broken into two do to its length.
ReplyDeleteCarol,
I applaud you greatly in having an open outlet to vent your pain. It is a very important thing to have when dealing with chronic pain and I am persuaded that many who do suffer tend to hold much of their emotional duress within, which then becomes stored within the very cells of our body and cause further problems. Yes I am speaking from experience considering that I too walk the same path dealing with my neuropathy. I have not had my condition near as long as you, I will be hitting 7 years this November.
I have learned much about pain during this time especially with the motivation I received from VA physicians telling me that I might as well just accept it that I would be this way for the rest of my life. One conclusion that I have come to is that whether it be a stubbed toe, neuralgia, neuropathy, shingles, sickle cell and so on they all have the most basic thing in common, it hurts. How bad it hurts really is a matter of genetics, willpower, and support systems readily available. I know more could be added but it is enough to make my point. I am persuaded that the loving God that has created man equally has equally equipped man to not bear more than is capable of tolerating individually. There are some people that are so sensitive that perhaps a stubbed toe will break them down and they just can't function, I would agree that they are in need of therapy but it is very well possible. Now for others like myself I have an extremely high pain tolerance and dealing with my condition at times is similar to just having my toe stubbed until things exceed that tolerance level. The truth of the matter is that we all understand how painful that pain really is but the problem is the nonsense of debating about who doesn't or does understand more because of how much harder it is to pronounce one persons pain level as opposed to another with all the symptomology that goes along with it. (See the second portion of this in the next comment.)
What happens is the focus shifts due to pride and it becomes a vicious debate about who knows more about suffering as opposed to realizing that yes pain hurts. When the focus is on the pain, more so the pain of the individual in question then it is a matter of is there anything that can, should be or is wanted to be done about it. Also there is the truth to the most self defeating thought of all who deal with pain acutely or chronically . . . I just can't take this. Sometimes it voices itself as, this is just too much or I don't want to live like this anymore. However, we can take this and it is really not too much because whether it is believed or not God really does care and love us and has enabled each and every man from inception to endure a specific amount of pain without breaking. The problem is in the chronic cases in order to take it many times a strong support system is needed but the first step will always be arresting that devastating thought pattern and replacing it with I think I can, I know I can, I will not. Yes, accept the obvious it hurts, and it hurts really, really bad but as long as there is breath and blood flowing through the veins small changes can be achieved each and every day. Just through putting down the negativity that accompanies the chronic pain so well extreme measures of daily relief can be obtained and maintained on a daily basis. I did not say it will make it stop hurting but it will hurt less and less often as the mental positive barrier is upheld along with a mix of a strong support system and other things.
ReplyDeleteI know I have been quite long, I am loquacious by my demographics . . . I'm southern. Although I just want to say once more that everyone really understands how much pain hurts and how bad it hurts really is an individual matter regardless of how much that same pain would not hurt us, it doesn't matter a person in pain is a person in pain. Let us cast off the prideful glare of disdain because one does not measure up to our level of pain endurance and be compassionate and realize that they are doing the best they can. Also for those of us who suffer daily we should be the most compassionate and willing to support and up lift those who do not have the high level of endurance that we do. Trust me it took about six of the seven years I have been dealing with my condition to come to this conclusion and yes I am a Christian. I will tell on myself. This conclusion was derived after listening to my wife complain about her aches and pains and my holier than thou self was smitten to the heart as God helped me to realize what I have shared. I am still a work in progress and have not arrived but it is very humbling when you put this into perspective. The bible speaks of God not allowing his Christian to go through more than they can handle but I'm fully persuaded that the loving creator, who has made all man and desires their full submission to his will, will not allow any to suffer more than they can handle. If you really don't think so the fact that you are reading this now is proof, all of us have at one point or another experienced an event so devastating that we thought we just could not take it but we made it through somehow. If you are interested in finding out more about me feel free to peruse my website http://www.seizeithealthmatters.com/.
I think imho of course, the problem comes into play about measuring and comparing pain when patients are not believed about their pain in the first place. In my corner it happens alot with conditions like lupus. We don't particularly look sick. You can't see a failing kidney or an inflammed heart. Most "lupies" I know online have to deal with doctors for years who poo poo their symptoms, it can take years for a dx., and families who don't get it and don't try because they can't see it.
ReplyDeleteWe have a motto: God grant me the serenity to accept the things I cannot change,
Strength to change the things I can,
AND....the Wisdom to hide the bodies of the doctors who said....
There's nothing wrong with you, it's all in your head!
LOL...but so true! So we're already on the defense unfortunately. Doesn't take alot to topple some of us over.
I think Carol has a sweet heart, to reach out to all in pain and accept it in all forms from all people-while being empathetic. Great quality Carol.
So whether it's an ache and pain or a full blown tn attack, pain is pain. I like Carol's perfect world where it is what it is and we treat each other the way we would like to be treated. If only the stigma of the very medications that we need to add quality to our lives didn't get in the way! It's a police state of prescribing narcotics out here..pharmacists who judge and snicker and put "addict" in our files we cannot see, ER docs who play God, guilty until proven guilty doctors attitudes, and a society that has no idea what not having quality of life even means.
The invisibility is a gigantic issue. My pain is from trigeminal neuralgia (a severe facial pain disorder) but is totally invisible, relying on symptoms only. Many go thru what you describe.
ReplyDeleteTo me a big a big issue we have no one to speak for us. There are groups for most of the pain disorders but no chronic pain association (anymore, You may know the American Pain Foundation closed its doors a few months ago). We are just not good at getting the word out. Some folks are in their own areas or states but there is not a general countrywide movement which I feel is what we need so people can 'get' it.