Does anyone ever have those days where you're just fed up with the world and most of the people in it? That was me today......I'm so tired of people judging me on an illness that they know nothing about or understand. Lately I've wanted to punch people in their faces some of my own family included!! People look at me and say "Oh she's just faking it because she doesn't look sick" or people close to me saying " Oh cry me a river just because your in a little pain". The thing I hate most of all is how people tell me how they think I should be living my life or what to be taking and I just sit there like your not me doctor and until you are you have no say I'm doing the best that I can.
So right now I would really love some advice from all of you great people so I don't end up punching peoples faces in and to also hear some of things judgemental people have told you!
Oh boy, oh boy do I ever know what you mean. Around here, my son & daughter in law were/are so judgemental and so vocal about my pain killers and anti-anxiety use that I finally gave up and gave in. I weaned my self off all the addictive nasties. 3 weeks later THE storms hit together with the worst flare up I've ever had and forcing me to face the attendant agony without anything but antidepressants and aspirin. NOT fun.
1 week after the storms moved out I had an appointment with my Pain Doc. who heard my tail of abject woe and put me back on morphine - Hang the kids' feelings, get the help you need - was his attitude. Luckily I listened to him because 1 day later I could barely breathe and could not rest for longer than 15 or 20 minutes at a time, could not sit, nor walk, nor drive, use my computer, knit, watch TV, eat - do anything at all. The thought of what this pain would have been without morphine is unimaginable. Turned out I had Bursitis, which a solid 3 weeks later is finally clearing up.
So, as Ricky Nelson sang in "Garden Party" - "You can't please everyone, so you might as well please yourself."
We all go through this, too often, and that doesn't make it right! We feel the same way you do about it, angry! You can give them great info to read, doesn't matter if it's a sentence, paragraph, page, book, a library! Even IF they show you the consideration to actually read it, if they have already been that disrespectful, and cruel toward you, it is doubtful such information would change their minds.
I don't know the answer, I only know that I find such lack of basic courtesy and compassion sickening, and I am very sorry that you have had to be put through this. It seems to me that the worst behaved people on TV everyday are the ones who are making fabulous money, winning awards, being celebrated, and emulated, and these are not just kids!
Lack of values? It's a good starting place.
We really do understand your frustration. Perhaps in time we can begin to change this.
I am sorry that you are experiencing this Nessa but , unfortunately, that is the world we live in. Most people are so busy with everything that they jam into their days (and weeks and months) that they have little time to worry about something that doesn’t directly affect them. And, again unfortunately, there is still a stigma attached to what is perceived as a mental illness (it’s all in your head). I lost my best friend since all this started because all I heard rom her was “when are you going to be normal” and “have they fixed you yet?” Like there was some magic pill that would make all this go away. So I withdrew from her. I just can’t be around anyone that doesn’t support me or is so negative (she was negative about so many other things too). I don’t expect anyone else to “understand” this disease/ syndrome because I don’t understand it. What I do expect from those close to me is for them to at least respect the fact that I am in pain and I do have brain fog, etc., and to be patient and understanding of the the way the various symptoms affect me. I, in turn, must acknowledge how these symptoms affect those closest to me, especially my husband. It can’t be easy to live with me right now. I am not one who lashes out at others too often; rather, I am one who withdraws and just wants to be left alone, which can be just as damaging to a relationship, IMHO.
As far as other people who might possibly judge me, I have no use for them. And it is a waste of my energy to try to confront them, educate them, or change their minds. These people are people who I can jettison out of my life and not feel at all guilty about it. So, hang in there, Nessa, and try to surround yourself with positive people who help you reach your goals and who help you find your happiness!
Hello,Nessa. Oh boy do I. Almost every day. I got so tired of having to explain myself & defend myself(often times to the same people over & over)that I don’t bother anymore. People are going to be ignorant no matter what I say or do & that’s their problem really. Hopefully one day we won’t have to explain or defend any more with increased fibro awareness. If only people could walk a mile in our shoes just once. Actually I’m pretty sure after a couple steps into that mile they would give our shoes back. On top of everything else we go through,we have to deal with scrutiny too. We might be weak & tired physically but in other ways we are mighty & strong,some of the strongest people walking the earth. Look at what we deal with every day & somehow find the strength to carry on. This is what I tell myself every day,this is how I cope. I’m fairly new to this board but it also helps to know that although the people here are not physically walking by my side,I know they are in spirit.
SORRY NESSABEAR THEY CAN HELP PEOPLE SEE WHAT ITS LIKE TO BE PREGNANT WITH EMPATHYBELLIES PUTTING PETROLIUM JELLY TO SIMULATE VISION IF AN ELDERLY PERSON AND PUTTING EARPLUGS TO SIMULATE THE ELDERLY PERSONS HEARING A FAT SUIT TO SIMULATE WHAT ITS LIKE TO BE A BIG PERSON WHY CANT THEY INVENT SONETHING TO SIMULATE WHAT WE GO TBROUGH EACH DAY AND THEN. RETURN TO THEIR NORMAL LIVES THEN WE NEVER HAVE TO EXPLAIN OURSELVES AGAIN DOES SOMETHING LIKE THIS EXSIST SURE WOULD BE NICE I HAVE 2 PEOPLE IN MY LIFE RHAT IVE TRIED TO EXPLAIN ABD HA E SE T POSTINGS THE SPOON THEORY SND A KETTER TI NIRMAL PEOPLE THATS ALL IM DOIBG OTHERWISE THE PEIPKE WHO ACT INCONSUDERATE I IGNORE SBD ORETEND THEY DONT EXSIST ITS NOT WORTH WASTING YOUR PRECIOUS TINE AND ENERGY TO GET THEM TO CHANGE THEIR MINDS HACE A GOID DAY E ERYONE
Suz, this is such a common thread among us that take pain meds or psychiatric meds. We are judged so harshly for taking the things that help us survive, as if we are not strong enough to deal without them, or worse yet, like we are some sort of junkie.
I gave up trying to hide my meds from my extended family, and just let it go in one ear and out the other. They had me thinking I was this horrible person for taking these things, like I was buying them in some dark alley, instead of being under a doctor's strict care! I had to learn quickly that my meds are very important to my well-being, and that they don't know what it's like to be in my medical condition, and don't care enough to try to understand.
So on with the Garden Party, and don't let anyone judge you for following doctor's orders and taking what you need for your own health !
Wow Nessa, You took my thoughts, word for word ! I don't have any advice, other than to walk away. I've found that most people won't change their opinions, and it only hurts us. Until they can learn and understand, nothing we say seems to make a difference.
I am so thankful for the group here, they are my friends, and they understand.
I've had people WITH Fibromyalgia tell me it's a garbage diagnosis, and not a "real" medical condition. I can't even get them to listen! I constantly hear from my others that it's a nonsense disorder too, along with things like: "you only do this for attention" "there's nothing wrong with you" and "stop pretending, you don't look sick!" The list goes on and on, and the sad thing is, it's usually from family. I guess they feel they are allowed to say these things.
Just hold your head high, and walk away. You know the truth, and that's all that matters.
Thank you sooooo much you have been such a help to me and have been giving me great advice :) I really appreciate it!!!! And what you said is so true we do live in a visual world and because we don't exaclty look like we're dying doesn't mean that some days we truly feel like we are, and it's a shame people don't consider what is going on INSIDE of our bodies instead of our outside appearance!
The shoe thing is so true I wish I could actually have people step in my shoes just for a little while and then they would finally understand what we all go through! That would definitely shut people up LOL
In my opinion the invisiable illnesses are the most painful medical diagnoses to have but " Pains and stings only make stronger our angel wings"
Thank you for your words of wisdom :) I have people on my dads side of the family that don't even know what I have due to the fact that they are judgemental and don't understand what they can't see and I didn't want to deal with their judgement and coments on top of being sick and I think it's better that way. So now I have been trying to help inform the people close to me what it's like so i don't get those judgemental comments as much! and thank you again!!!
As a freshman in high school, almost everyone notices when I am having an off-day. I have trouble on stairs, holding a backpack, etc. So of course people question me. I never want to go into the whole Fibro thing so I usually end up making up a story. Like I fell off a bike, twisted my ankle, didn't sleep last night; people are a lot more satisfied with those answers. I'd rather be known as "accident-proned". But dealing with people who are close to you is something I haven't quite figured out.
In school I never went into the whole fibro thing either but people didn't question me too much due to the fact that the school knew how sick I was because I've been sick my whole life so I never really brought fibro up. But with family it's like 20 times more difficult with some of my family after I got diagnosed was just silence, some didn't believe it and other accepted it but didn't take the time to acknowledge how it affects my life. I too am still trying to figure things out but it will get there I hope!! Good luck to you and with us being close in age maybe we can help each other out so it doesn't take so long for us :)
I was thinking of you earlier, out finishing up the toy shopping.
I mentioned this on another thread, and wanted to repeat it to you. The TV commercials for the meds we take, all of these people look well, strong, happy, living the perfect life, taking this med. I have Psoriatic arthritis, and take Enbrel, there is the golfer, Phil Michelson who does the advertisments, SO everyone thinks that if you take this, you will have the strength and energy to go play in the masters too!
NO one realizes that this med is not covered by all insurance companies, that the out of pocket cost is between $1500.-$1800. a week, and it may help, it may not. If there is already damage done, nothing will reverse it! Sometimes it does help, but not enough, or sometimes it doesn't help for very long.
The others don't realize a lot of things, and just don't take the time and engery to ask, listen, or to 'look it up'.
So sorry you have had to go through this, and continue to go through this, sorry that we all do.