Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I have seen quite a number of posts by people upset by the lack of understanding of nonfibro people and I don't want to appear insensitive, but can we expect anyone to understand? When I first got my symptoms I was totally sure that I was dying because I could not believe that anyone could hurt that much and not be dying. It is so unimaginable! It does not matter how good we are at communicating. I just don't think it is possible for anyone to fathom. I think that at most they can accept our limits, and that's it. We have enough to worry about. Let's try to not let others upset us. It's not worth the pain, literally.
Some of us live with the nay-sayers, and some of us are aware we should not get upset but when we are tired and in pain and do not have any help from meds (e.g., I can't take SSRIs or SNRIs with my epilepsy and my epilepsy meds), we are more emotionally worn and vulnerable. So while I see your point, it's not always as easy as it sounds.
And yes, we CAN expect others to understand to some extent, simply out of basic empathy. I didn't have pancreatic cancer, but I knew my dad was in horrific pain and I could accommodate his needs and limitations without having the pain myself, and feel very bad for him. I don't think it's too much to expect SOME compassion, particularly from family and "friends". (Note my sarcasm quotes there!) They xpect it from us, after all. (Anyone else get the "Well yo say you know pain why can't you understand how much my head hurts?" kind of thing? I don't, but that's because I quit answering my phone!)
That said, yeah, we all need to find a way to limit the damage that stress can do to us.I like to give myself half an hour of "upset time" and then just do some deep breathing, find forgiveness, and move on. Or rant on DS. Both are good coping mechanisms for me most of the time.
Do I expect them to understand the full depth of the physical pain that Fibro brings or the weakness My Immune Disorder brings just before it is Infusion time? OF course not!
My 2 close friends, out of their caring for me listened to me prattle on about the science behind my illnesses and the pain. Do they REALLY understand? Of Course Not! But they try, they ask questions to attempt to understand, they show concern about pain levels, and I do the same for them with their personal problems.
So, I don't care that my 2 friends don't "get it" I care that they TRY to get it. I care that they offer comfort and support, and I feel privileged that 2 very special people allow me into their lives so I can do the same for them.
So I think many of use get upset and disappointed because those who are closest to us disappoint us over and over, and yes we say they don't get it, and yes we get angry, and yes they seem insensitive, but I think all the venting comes from a deep place of hurt.
Is it possible for anyone to fathom? Maybe not. Is it possible for them to try, to take an interest in your well being, to be kind? Heck Yeah.
I think what hinders us most is that fibro is so relatively unknown. I also think that what fools us is when people try and we lull ourselves into believing that they do understand and then they do something blatantly off! Not even on purpose, just clearly not understanding. Perhaps our disappointment is about ourselves, that we fooled ourselves into believing/hoping that they understood. I remember how hard I tried to convey it and it just got boring for my children and my husband. They could not wrap their heads around it.
In fact now that my 2 closest friends know about my DX's and I have been DX'd for a couple of years, my DX's are rarely a topic of discussion b/c I am not my DX-something true friends and family understand. We laugh and talk about all kinds of non-Fibro stuff b/c there is so much in all of our lives to laugh and talk about.
The only time My DX is discussed is when I have testing or if I am feeling particularly bad, then I might lean on them a bit. Even when they misunderstand something it's no problem. They are sincere, so I know it still comes from a place of caring.
My co-worker told me when she sees "people like you" (me) getting out of a car with a handicapped placard, she knows they're "driving daddy's car."
I don't have enough fingers to count the number of people who are told "If you'd just lose weight..." or "You're just lazy."
Not understanding is, no pun intended, understandable. Being an insensitive jerk isn't.
Some days the best I can do is to remind myself that such remarks and attitudes define them, not me.
There is a difference between not understanding and ignorance.
Someone, a husband, a child, a friend can care deeply for you without understanding the science behind Auto Immune Disorders, and truthfully when you are cared for in that way, the whys and hows of Fibro stop mattering.
It's when people are ignorant, rude, verbally abusive that you or at least I, sometimes feel I need to give an explanation so, say my brother will not think I am pretending to be sick so I will not have to work. But, I have banged my head against that brick wall one too many times, so sadly he goes in the "Insensitive Jerk" category and I move on.
For some reason, and I can not put a finger on it, (and it is not personal, and I am not attacking your opinion Emily) but the statement that I let myself get fooled and lulled into a false sense of understanding sounds patronizing, and it kind of insults my intelligence. Again, nothing personal, just my interpretation.
Ignorance doesn't bother me. The world is ignorant about a million things, period. I am including myself there too.
Rudeness bothers me very little, not much. Their tough luck to not have had parenting that taught them how to face the world. I can't imagine that rude people have it easy without better life skills.
But, consideration from those close to me IS important. Generally I get the consideration I need EXCEPT for my family getting tired of me talking about fibro and why I might have this or that or feel this way, or... Fibro talk bores them to tears and I can tell even though they try to hide it. Now that I have this forum I can have my fibro talk and it is easier for ME to understand that they cannot possibly be that invested in the whys, hows of the disease..
From those around me, I expect "in your head" understanding (acquaintances, friends), or "in your heart" understanding (close friends and family). But, for instance, my husband is wonderful but sometimes he will look at me and ask what's wrong, like he really forgot that I wake up stiff/in pain. Or he will offer me something to eat that he knows I cannot have, or.... Silly, not important things, but that is when I realize that I had lulled myself into thinking that he REALLY understood.
You know how sometimes something is said that just sticks with you for life? It may seem random and even insignificant to othes, but at the time it had such a significant impact on you that the impression is there forever.
At one point, someone said to me, "O.K., well, that's one person's opinion." That one little statement has helped me remember to step back a bit and at least TRY to see that forest and not focus quite so much on the tree in front of me.
As hard as it can be, with repetition and a conviction to prevent the stress that comes from trying to change others, one really CAN get to the point of shrugging our shoulders, saying to ourselves, "Oh well," and carrying on. And by carrying on, I mean saying "no," when we know something is beyond our limits without feeling guilty; trying to focus on the things in life that bring us joy; and allowing ourselves to be simply who we are with whatever limitations we may have developed or whatever limitations wax and wane.
Easy? Nope. Possible? Oh, yeah.
Geez, I thought we were going to be friends, fat chance! Really, I can't worry about other people's beliefs. It seems strange to me, like when my grandson had leukemia, and a lady said "kids don't get cancer". Well, what can you say? Some people are SO ignorant.
And then, I met a woman who had to help her dtr. take care of a child of 13, and I laughed. And it turned out that my friend's grandchild had Rhetts, which is a terrible genetic condition. I looked it up and was so embarrassed about MY ignorance.
So there it is, we are all ignorant about something.
I get it, Lulu.. My dear friend does care and is nice to me.
Peace, this lady is an asshole.. : /