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Don't know how to respond anymore...

Apr 02, 2017 11:25 AM

Hi all :) This is my first time posting here. Wish it wasn't a "rant"! But, here it goes: My frustration is at an all time high with not knowing how to respond when someone asks how I am. As most of us know, many people who ask that question don't really want to know. Typically, it's asked out of politeness. They expect a short polite reply in return & they move on. I keep trying to revise my go-to response because none are working. I'm constantly wrestling with: should I be honest or not. I have to think about who's asking & whether or not they know I have chronic pain (among other things). Is my boss asking? A family member? Which family member? Almost always, if it's someone who I think wants to know the truth, I'm still met with either the look that says, "ugh, here we go again", or, "it can't be that bad, you're too young, you still work, etc". Mostly, I get people who've said: "it's not all about you", "it'll get better", "someone I know has 'xyz' & they can't even get out of bed". Or, I have a time limit when I talk about anything. Most of the time I don't say anything because I don't want to hear any of the ridiculous, hurtful replies. But, also because I get cut off a lot. Other people are allowed to go on and on while I listen. But, if I have something to say, no one cares. And forget trying to explain Fibromyalgia or any other chronic invisible illness I have. But if I don't say anything, or lie & say I'm fine, I'm being rude. Ugh. So frustrating. Can't win. Anyone else?

Apr 02, 2017 11:54 AM

Hi PalmTree3. I am sorry you have to deal with this battle . πŸ€— normally I say I'm okay . Fine or even good with a smile on my face .it's all how you are feeling at the time they ask. Remember nobody has the right to judge you or compare you to others .

My opion these who already gave you negative response. Those are the ones who doesn't care . When I ask how someone is doing . If they say other then good . I remind them I am here if they want or need to talk. Because I do care and love helping even if I am just listening

Hope things gets better for you. πŸ€—πŸ€—πŸ€—πŸ€—

Apr 02, 2017 11:58 AM

My rule of thumb when someone asks how I'm doing is to reply "fine thanks!"
My reality is to come here when I'm hurting and vent here instead of tell anybody who's asking me unless it's someone who I know is really interested or really concerned. My Facebook quiz that showed me the most commonly used word on my Facebook profile is the word pain. Ever since I saw that it really made me feel limited to what I could say because I felt like such a complainer.
Feel free to vent here because that is what this app is for. To measure your pain levels and keep an active diary and to be able to talk about the issues that you are suffering from. Remember you are never alone.

Apr 02, 2017 12:01 PM

Thanks Westrengirl 😊

Apr 02, 2017 12:17 PM

Thanks Julianna 😊 I don't talk about it unless I have to. If someone asks me to do something or go somewhere & I can't, I tell them that I can't handle it at the moment because my pain levels too high, not enough energy left, etc. I don't go into it unless asked, though. I don't think I'm complaining. I see it as explaining the truth about what I'm going through so people won't think, oh she said she's fine so she can handle doing more. If she doesn't then she's just being lazy. I just feel overwhelmed fighting to get through each day and having to figure out what to say or not say all of the time. It's exhausting! I know I'm not alone. Thanks for listening πŸ’œ

Apr 02, 2017 12:18 PM

We kind of got used to certain friends not inviting us out to do physical things because my pain levels would limit me. What we did was we got more friends that also had physical limitations and were more understanding and we tend to have a much better time because of the consideration. I'm hoping that you have a large Network living near you so that you can do the same. You will find that your quality of life improves when you have more Compassionate Friends. I know ours did.

Apr 02, 2017 12:29 PM

My response to that is "At this point today I'm bearing up" smile and carry on with what I was doing. If I say pain is high or anxiety is high I get the response "but you're looking soo well"
As I suffer from trigeminal neuralgia, when the pain is high I wear a lidocaine plaster on my left cheek to numb the pain so I can still partially function. I can't hide a big white patch on the side of my face which covers all of my cheek so people know when I'm in pain when they see that and I still get "but you look soo well still" and such!
When my anxiety is high I shake, my whole shakes so people constantly ask did I have a good drink last night and if I say it's anxiety some give a look that says they don't believe me so I give up!!! What is it you can say???
You're dammed if you do and dammed if you don't!!!
Sorry didn't mean to rant but I'm a little fed up with it as well!!!

Apr 02, 2017 12:50 PM

I totally get it Sezzy! It's maddening. I've had a nurse say that to me. She said, "you know, for someone with Fibromyalgia you look really good". I just stared at her in shock, not knowing what to say. I wish I would've said, "yeah, looks can be deceiving". I don't know why I'm still shocked to hear such mindless remarks. I should be so used to it by now! Some days I feel so bad I really don't care what people think, how they respond, or if I have a sh***y attitude. Sometimes I can't help it. The pain, anxiety, fatigue, hormones, irritability take over. But, yeah, it really does feel like there is no one size fits all answer that will be sufficient enough for everyone to understand what we go through. I try to remember that I don't always have the best response to people either. 😬 Anyway, u vent all u want. Lord knows we need to have somewhere to go to do so!

Apr 02, 2017 1:00 PM

" for someone with fibromyalgia you're looking really good!" And this was said by a medical professional? Unbelievable!

Apr 02, 2017 1:08 PM

I think it is great when we learn who we can talk to and who we can't. Some say they are fine. I say I am here. But that is our way of being compassionate to others as well. There are a lot of people who just are not made to handle others pain. It takes special. Takes speople people to offer empathy and concern for others. Others were not given the tools to help people because they didn't get that as they were raised. I think it happens a lot these days. I tend to feel bad for theses people. I think many of them mean well a good many times. They just are uncomfortable. And they are afraid to imagine themselves in the same situation so they want to avoid it and move on. It hurts though.

Apr 02, 2017 1:10 PM

Couldn't have said it better myself profiler.

Apr 02, 2017 3:35 PM

When asked if I am doing ok I just smile and say "I will be...." or if they say I am looking better I just smile and say "In have heard it said that looks are deceiving." often they don't know how to respond and let it go.

Apr 02, 2017 5:14 PM

I often say, when asked 'are you ok' 'I'm fine' or 'erm yeah' as a natural response. This can then stop the butting in on your replies and don't forget the interruptions of 'their' similar stories because they too are in pain and only asked you in the first place in order for you to be a listening tool for 'their problems' cos they are much worse and are in such competition with the whole 'my life is worse than yours' scenario! πŸ˜‚πŸ˜‚πŸ˜‚ My response really does depend on who is asking and if I'm feeling really sassy πŸ’πŸΌ I stop in my tracks with the whole 'I'm fine' routine turn and say 'you know what I'm not fine, actually I feel....' then just spill my guts! I'm finding this method quite fun now watching people's faces and reactions thinking, ha they won't ask again! It can be so frustrating when people just don't understand. I am now working on more positive things to say as I think this is the way forward for me. Positivity helps manage my pain well plus can help my mindset be patient with 'those who have no clue.' So my advice do anything you can to work on positivity, I like to read 'don't sweat the small stuff, and it is all small stuff' by Richard Carlson as this helps so much and is a great start. Xxx πŸ’ͺπŸΌπŸ’•

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