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My memory isn't getting any better and I think maybe I already posted about this, but here it is again because I think this could be helpful to all of us. I know it will be therapeutic for me.
Exclude the nasty, mean people. For the rest, I think that most people really don't know what to say when we say that we hurt.
I remember pre-fibro when my mother who had fibro but complained very little or my elderly aunt who was not diagnosed, but might have had fibro and complained all the time, said that they hurt. I didn't know what to say. I would say, "Oh, Mom!" maybe follow it with "Do you want an Advil?" Or, "have you told your doctor?" I would shrug my shoulders some as if to say, "What can I do?" I thought that they wanted me to DO something and I was waiting for them to say, "Get me a ...." I wanted to magically take their pain away but I couldn't and I thought that of course, they knew that I couldn't, so why say it? Now, when it is too late I realize that I should have said what I felt inside. I should have said, " I am so sorry that you are hurting and wish I could make it go away. Is there anything I can do for you?"
Until people wear those pain shoes I think most people don't know what to say. We and those around us would all feel better if we now saidthe obvious. "I know that you cannot do anything about my pain, but it makes me feel better when you say that you wish you could make it all go away."
What do you think?
Exclude the nasty, mean people. For the rest, I think that most people really don't know what to say when we say that we hurt.
I remember pre-fibro when my mother who had fibro but complained very little or my elderly aunt who was not diagnosed, but might have had fibro and complained all the time, said that they hurt. I didn't know what to say. I would say, "Oh, Mom!" maybe follow it with "Do you want an Advil?" Or, "have you told your doctor?" I would shrug my shoulders some as if to say, "What can I do?" I thought that they wanted me to DO something and I was waiting for them to say, "Get me a ...." I wanted to magically take their pain away but I couldn't and I thought that of course, they knew that I couldn't, so why say it? Now, when it is too late I realize that I should have said what I felt inside. I should have said, " I am so sorry that you are hurting and wish I could make it go away. Is there anything I can do for you?"
Until people wear those pain shoes I think most people don't know what to say. We and those around us would all feel better if we now saidthe obvious. "I know that you cannot do anything about my pain, but it makes me feel better when you say that you wish you could make it all go away."
What do you think?
I think you are right that many folks do not know how to be appropriately responsive or helpful. Even if they love us, they may not be strong enough themselves to handle the challenge.
My eldest son (in his 30's) told me he didn't want to hear about my being unwell any more, and soon after quit communicating at all with me. I had not been whining at him, he just couldn't handle it that my life was not full of adventure and activity like it once was.
Life isn't exactly easy for anyone. We fibro folk have an additional barrier in staying understood and close to others.
My father was one of those very positive-thinking people. He absolutely did not want to hear about anything negative or unpleasant going on in your life. I learned later as an adult not to complain about my problems in front of him. He just didn't know what to say!
My mother, though, very much understands my pain (and I understand hers), since she has very bad arthritis pain and is bed-ridden in a nursing home.
So, absolutely yes, people many times don't say what we want them to say, b/c they just don't know how to respond to our pain. If only they realized saying something like what my husband did this morning, can make a world of difference!
My grandma has fibro and I remember thinking that I would love for her to be more positive. I have always been empathic as an adult and do keep ppls feelings in mind.
When you do deal with problems, like my son with aspergers explosions in Target or telling someone you can't come over due to fibro, you see another side of ppl. You see a different side of ppl.
Ppl close to you should at least keep in mind these things and not make you feel dumb. The lease ppl can do is read about it on a reputable website. edu goes a long way.
I know what you mean...I provided info for my family...hand picked easy to read, reliable, medical jargon free, short articles, and they still chose not to learn. But I gave up on them learning some time ago.
Now I all I want is simple Kindness.
We do simple acts of kindness every day for strangers-we pace our selves with elderly folks walking into a store-we hold the door open and patiently wait the extra minute or 2 it takes them to get to the entrance, we make room for those in wheel chairs, we donate clothes to those less fortunate and at one time I actually asked a mom if I could buy her a coffee b/c her 2 year old really put her through her paces and the woman needed adult conversation.
These are small kindnesses we do for strangers practically every day.
For me it is not about anyone having a deep understanding of my Disease.
It is about simple kindness. I listen to my mother's Significant Other' talk about his business and how tired he is at his age...I listen carefully, I ponder, and I don't need to walk in his shoes to say "Scott, you want to retire. You have worked hard all your life. tell me what is stopping you from retiring right this minute?
Is it so hard for someone in return to say "I'm sorry you are in pain today. I'm on my way to the market. Is there anything you need?"
See, that statement requires no understanding, empathy, no education- It simply validates how I feel and kindly offers a grocery run.
I don't need to go into detail about my pain, I really don't need the 'walk in my shoes' understanding.
Simple validation works just fine.
That seems to be the crux of the matter. In just five words.
Maybe some people (very few, I think) know how, some can be taught, and others can't. How many people do we know who are not in the helping professions who do this on their own?
I find it is a lot of people, and it is shown in many ways by people who are not fully educated about Fibro or any other disease.
Here are some people in my life that validate me all the time without a deep understanding of my illness, they know I am not well, they do not question that fact, and they act out of kindness...to me that is validating
-It's my 92 year old neighbor who has no idea what Fibro is, just knows I am not healthy and makes me homemade gingerale
-It's the woman across the hall who brings me plantains when she sees my home health nurse-she just knows I'm sick
-There's the woman at the coffee shop who notices my absence and asks if I'm OK, and if I say I've been sick she calls for Joe the baker to come pick out the best donut of his batch for me
All of these people validate the fact that I am not a well person. They don't question me, they are under no obligation to go the extra mile but they do anyway.
I have been very fortunate to have such nice people in my life and I am lucky to have had the opportunity to return some of their kindness, but the fact is, there is no way I could ever repay them for the way they acknowledge that I am sick, and intentionally do something nice based on that alone;
I agree that people who are not supportive have no place in my life. I have no time for selfish people.