It is time to stand up for yourself

Discussion in 'Fibromyalgia Main Forum' started by FMsolider, Feb 16, 2007.

  1. FMsolider

    FMsolider New Member

    Warning: I mean no disrespect in this post nor do I want to hurt anybody's feelings. If your having a senstive day please move on...this could very likely be taken the wrong way.

    I sincerly think it is past time to stand up for ourselves and one another when it comes to anytype of "normals," and our shared and dreaded FMS. It sadens me so deeply to see posts day after day about how someone is bulling us around in one way or another. I personally refuse to take it anymore and suggest everyone here do the same.

    If it isn't a doctor or a boss or a lover or a friend ect...it is a complete stranger attempting to make us feel or insinuate that we are drug addicts, drug seekers, lazy, fakers, liars, attention seekers, or my personal fav. - just too senstive to life's everyday aches and pains. And lets not forget crazy!!

    What drives me more crazy is reading posts about how to make someone understand or legitamize our illness. Please, folks do not take this the wrong way....I mean no harm in this! What should we say when faced with these awful accusations? Tell these people to ( explative mentally inserted) off!!

    There is a massive difference between ignorance and sheer rudeness and implyed insult to integratity. We deserve better and so does most people on this planet. No one has the aurthority to say we are or are not trully sick. Not even a doctor. We do not have to explain or justify this huge burden we carry. We do not have to prove it because that is impossible.

    If someone is trully skepical of the facts - nothing will change that. Whether the facts are personal..ie...I seriously can not work full time or the facts about the disease in general..ie...fibro is a mental condintion. This sucks to say but even if your own mother thinks you just need to toughen up well, then she is a jerk of a mother,( of course not every case.)

    I think at one time or another we have all been betrayed in this way and if your newly diagnosed and have yet to come across this - sadly, your day is a coming. All I really mean is lets all stand up for ourselves and in turn we'll be standing up for us all. If someone you encounter actually thinks so lowly of you to call you or treat you as liar (isn't that what each insult here breaks down to?) -then turn those horrible questions right back at them.

    I wanna hear some of us say,"How dare you not be supportive of me?" " How could you possibly believe that I am not doing everything in my power to overcome this?" " How can you possibly judge me for an ailment so horrific as if it were my fault?" "How can you not educate yourself about this proven illness...perpahps you are the one who is lazy?"

    I am all for spreading awareness and being patient but, sometimes - some people are not worthy of us!!! And for the love of God - remember some people would not last a day in our bodies. More often than not - when faced with these toxic types we are the strong ones ...and they are not even sick.

    Lets not allow victumization!
    Just food for thought....

    With true love -
    FMsolider
  2. happycanuk

    happycanuk New Member

    Of course, I don't know what people THINK!, but I have never had anybody say something derogative to me about OA or FM. My Drs. have been knowledgable and helpful. There is just so much THEY can do. Your health is YOUR responsiblity so if you are NOT happy with what the medical profession is telling you, it is time to seek out alternative medicine. Chiropractors are NOT evil, bad people, as some of you seem to think. I have had the greatest improvement in both OA and FM from an Upper Cervical Chiropractor. Also, my Naturopath has done wonders for me as well. Naturopaths are knowlegable about diet, vitamins, minerals etc. and make sure that you taking everything the way you should. Some vitamins and minerals need others to be absorbed. Otherwise, you could just be "peeing" away your money.

    I would NEVER allow my kids to talk to me in some of the ways that I have read on the board. It just wouldn't happen. Perhaps, it is because they are used to it, as I have had major back problems since they were small. Even my gdaughter understands limitations and has since she was 2.

    I don't bother with long explanations, as unless it is somebody who already has FM or OA, they really aren't that interested. One day, when they get older themselves and have trouble, they will understand.

    It is the same as young people who are intolerant of little kids! They change their tune when they have kids of their own. Nothing like experience.
  3. lookingoutthewindow

    lookingoutthewindow New Member

    Well, if that don't get you off the pot nothing will. Wish you were my neighbor. THANKS!!!

    Johnna
  4. bewell4

    bewell4 New Member

    i wish i still had your energy. (i mean this fondly, and not disrespectfully; i realize i do not know what "energy" or challenges you personally are actually facing). i think i have always been one to fight instead of cave in. i was so outspoken and so...crackling with fire and passion to educate the world about whatever i was passionate about! until all the fight was slowly and repeatedly taken out of me. the "running on a dead battery" feeling combined with a situation i truly lack the resources to change.

    i just want to point out that...

    i agree, and yet i want understanding. for one example, i am living with a hostile family member, and i have tried every kind of communication trick in the book (believe me, i have been diligently studying this for years!). for example, a gentle request to change dishwashing soap brands, because the current one makes me *very sick* (it also severely aggravates the pain in my hands) sent this person into a rage that lasted for days. i cannot change her ...issues, and so i have just stopped trying to get understanding. it is less painful. it is also necessary to protect myself emotionally, and even more than that, to keep the peace so that my innocent young son is emotionally safe. he does not have the life wisdom or coping skills to navigate a conversation or interaction with a severely enraged, mentally unstable person (my family...in case you thought i was talkin' bout myself...lol)

    another thing, (which, by the way just *kills* me with frustration!) is that ...i would *love to get alternative care!! i believe there are many, many alternatives that could help me, and furthermore that the "free" pharmaceutical meds that i am taking are probably adding to my illness and not contributing to the cure " " ...and yet the alternatives are out of reach because since i am too sick to work, i cannot afford them! please tell me you see the irony in this. . .

    sigh!

    anyway, i appreciated the encouragement. i will keep in mind. currently, i feel so down from having to fight just to get out of bed to get breakfast, and waking up with pain in every inch of my body...i don't feel like i have extra to confront ignorant people and defend my condition. i know that the silence only condemns all of us to ..brain fog...forgot my point. anyone know what i am talking about?! (gar! darn brain fog!)

    on another hand...i did* send that video (sparkledust? can't remember, having another brain fog moment..sorry) out to all my friends and family. i got supportive replies from, i think, 4 people, and i am hoping that it helped a bit to spread awareness and compassion!
  5. bewell4

    bewell4 New Member

    i wish i had your therapist!! mine told me "you really need to get a job!". i know she was trying to be supportive, because she could see that i really need to be living somewhere else, somewhere safe and comfortable, and that the steady abundant income from a job (ha, just accidentally typed joy) would certainly improve my life. but, the thing she did not seem to have a clue about is how sick i am and how exhausting fibro/cfc is!! i want to scream, like, do you not understand that i am not stupid, and if i could work, if i could get myself out of this dark hole, of course i would have done it already!!! anyway, that is so great that you actually have support from her/him! :)
  6. bewell4

    bewell4 New Member

    well, this time i am looking for a grief counselor, and i know to ask about experience with chronic pain/fibro before i spend 6 months of my time--sigh. that was going to be another rant. :) really i do feel more hopeful because i think i know what to look for! i am sure there must be someone* out there who is compassionate about this issue!
  7. Bunchy

    Bunchy New Member

    AMEN TO THAT!!

    Love Bunchy x
  8. Suzan

    Suzan New Member

    I agree..and often feel as strongly about "the cause" as you have put into your words.
    BUT
    Then things happen..most recent was my usually supportive husband telling me that his frustration with me was totally due to the fact that I have a bad attitude and am always complaining...Keeping in mind that I have been dx'd with fms for 4 years now...and have been in the worst flare to date for the past month!
    Anyway..it just goes to show you..that even someone that loves me..and is usually supportive..can get as worn out by this illness as the person who is sick with it I guess! When I "reminded " him of the fact that I am sick...His retort was..it isn't the fibromyalgia..it is YOUR ATTITUDE...LOL DUH. The fibromyalgia is directly related to my attitude.
    Now..my point to telling this is...although I do feel like we should stand up and say WE DESERVE BETTER...I do think that until there is solid medical information about these illnesses...we will be fighting an uphill battle to be heard and understood. Nonetheless..when I am up to it..I will fight the fight...and not be ignored!
  9. Seeseaisme

    Seeseaisme New Member

    When going through therapy lately, I explained to the therapist that my sister told me I needed to get a job. The therapist said "How dare her!".

    My feelings were vaildated by the therapist and we talked about this for the whole session. I'm now into my disability case for a year and waiting for a date to go to the judge. I can not work, now. Period. I can't bargain with these feelings, or make my life start over. I have to deal with what I can and can not do.

    I made a copy of "The Spoons" and "Letter to Normals", gave them to sister and she backed off and is much more sensitive to me and my coping with this illness.

    Charlotte
  10. Mini4Me

    Mini4Me New Member

    I have reported two docs to the American med asso. and the Idaho medical asso. so far. I also fired another doc recently after I told him off because he didn't agree that part of his job entailed proper treatment of chronic pain. Usually nothing is done to the doc when you file a complaint, but it is in their records for life after you file it!

    So, I agree. Don't take this anymore!!! Let them have it!!
    Mini
  11. bunnyfluff

    bunnyfluff Member

    "we're not gonna take it!
    NO! we ain't gonna take it!
    we're not gonna take it ANYMORE!!!"

    Did you see my post that we are 4X more likely to get CFS than Breast Cancer?? Do you see anybody "racing for the cure?"

    My husband is finally begining to understand. When I exert too much I get Mono in a BIG way, massive EBV reactivation. It pretty much sucks. We went out on Vanentines Day and we were talking about retirement in 10 yrs or so- how he likes to ski (I can't), and he said I needed to understand how much it meant to him to stand on the top of the mountain, and how he couldn't let me (and my illness) stand in his way.

    I told him I never would stand in his way, but to imagine that it is that important to me also, and when I do it makes me so sick, but I try anyway. So when I get so ill it pi$$es me off, so try to understand when I am angry with this disease, because it stands in my way.

    And he nodded, and I think for once he understood how it felt to have the will to do things, but not the ability, or to try and fail, and how that is just not me.

    But for anyone who tries to put you down, I will tell you that this life treats you how you allow yourself to be treated, and that what you get out of it is what you take for yourself, your success, your happiness, you make these things in your life. There are a lot of people who are not worthy, and I have no problem removing them, or telling them how they WILL act if they are to be in my presence.

    I am The Queen.
    I run the Bunny Show.
  12. shalyn840

    shalyn840 New Member

    I understand what FMsoldier is talking about here, though, I have taken a different view.

    My mother did tell me that there was nothing wrong with me, I just need to "buck up". I have coworkers who mock me at times. I thought my one best friend understood, but it ends up she doesn't either.

    MY NEW APPROACH??? Keep my mouth shut about it. I don't tell anyone anything. If I ache, I suffer alone. If I have to see or talk to a doctor, I do it privately. When I take my meds, I do it privately.

    I figure, why bother talking about it when nobody around me seems to understand anyway.
  13. suzannekart

    suzannekart New Member

    I want to say Who Cares. I have been told I have an attitude. Well heck yes I do. I long ago gave up trying to explain anything about myself to anyone. It seems most of the concern is about people who are about as sensitive as my ex. I don't waste my energy or time on them. Just say what you want and when they look at you and say something negitive respond with "sounds like a personal problem!" and walk away. The only way to be a victim is to act like one. Don't do it!!! You say I'm a b---- like its a bad thing! Suzanne
  14. Kazah

    Kazah New Member

    well said!

    I didn't tell anyone for years and only started sharing in the last two/three. Work is the most understanding, we nearly all have health issues and are a small team. we take it in turns to be sick!

    It also helps that alot of them have friends with this condition and know how bad it can be. They know when i need to go home and are very helpful.

    the only person who seems not to understand is my partner. He has known for the longest but seems the last to take it on board. His last comment when finding me in bed at 5pm the other days was - you need to do more excersise!!

    I don't really bother him about it now. It seems to help him to ignore it and i don't want him to think of me as sick. I suppose it's very unromantic. I just ask him to do things but don't explain why. He should take his turn at thngs and is quite a new man in many ways so i kinda use that arguement instead.

    I'm not very assertive about how I feel and what I should/Shouldn't be doing but you have inspired me today. I will try to give it a go more often especially with drs...

    thankyou for your post, we all need to hear thus now and then. I love this place, it's they only place we can all feel truly validated. that's also sad in itself. We should feel like this everywhere. lets spread that word!

    best wishes
    kazah
  15. FMsolider

    FMsolider New Member

    I had no idea that this would cause such a reaction. I am greatful for everyone allowing me to be heard. Some real great comments here...lots to think about and consider.