Discussion in 'Fibromyalgia Main Forum' started by Butterfly_of_grace, Sep 6, 2006.

  1. Butterfly_of_grace

    Butterfly_of_grace New Member

    ok...the following is a quote I wrote in one of my posts to someone who was very sweet and wished me well on my new job and also said I may be able to get some good tips for the fibro (Im working for a Chiropractor now). Thank you to that person for writing that, you are so sweet and I appreciate your well-wishes!
    Im cutting and pasting my response here because after writing it I was thinking maybe theres others out there who go thru the same nonsense that Hubby and I experience. And how many people out there have the same scenerio as me and hubby when it comes to selfish judgemental people that we deal with on a daily goes;

    " .....As far as getting tips on my health from the Dr. I will be working for; it seems that people are NOT so understanding with my health and its done damage to my employment in the past therefor I have learned a valuable lesson...DO NOT MENTION MY least not for a very long time. People have judged me because of it...just as they have judged my husband for having a newly found Seizure disorder. Isnt this world cruel and selfish? Its just as bad when they ask me what hubby does for a living anf I tell them hes a custodian at a high school. Snooty people look down on :us"...sad thing is is that he is just as hard working (if not more) than your average top executive and trying to make a living like the rest of the world. Because he had a horrible care accident when he was almost 18 it took away ALOT from him. He suffers from short term memory problems which made it difficult to go to school after high school. He married young, divorced young with two kids and had custody of his two children when his son was 6 months old (hes now 11 1/2yrs old, 6th grade and with learning disabilities)...he took the best job he could with full benefits to help his children. Yet people dont look at him in an honorable way...they look at him like hes some sort of loser. Now since he started a seizure disorder 2 1/2 yrs ago (6 months after we got married) people treat him differently...they act like he has the plague....its sad. People are so judgemental.

    Anyway, its hard fact. I will be silent about my health because again its backfired on me several times. Hopefully I will be able to function ok. There is a vast amount of people who STILL have no idea what fibro is and think youre nuts when you talk about it.

    ok so thats it...Im wondering out there what the consensus is. PLEASE FEEL FREE TO SHARE YOUR EXPERIENCES. I think it will help all of us not feel alone and definately not feel ashamed or guilty for being sick

    Thanks so much!
    [This Message was Edited on 09/07/2006]
  2. Redwillow

    Redwillow New Member

    Butterfly what a beautiful ocean picture in your profile! There is something about water whether it is a lake or the ocean that is just magic.

    I know what you mean about telling people that we have FM. It seems nobody has heard of it or worse they know someone who has it and judges us as all be lazy and fakers. I find it is easier to just not say anything.

    hugs Marion (Redwillow)

  3. Butterfly_of_grace

    Butterfly_of_grace New Member

    Thanks for your response.
    When I was first diagnosed all my sister could say was "Fibromyalgia is nothing but a label for severely depressed people inwhich who "think" they are sick but even after tests and things are performed and theres no answer they use Fibromyalgia as a label". Basically she feels Fibromyalgia is nothing but a depressed persons disease. This is coming from a person who EVERY TIME I SEE HER theres something wrong with her knee, back, neck, hand, head, etc. GO FIGURE!

    As you can tell I have a very unsympothetic family. I have two brothers who also dont give a hoot and a father who is heartless and very cold and thinks its "all in my head" all the time and the Doctors are just out to "collect a buck".
    Theres only one family member, my mom, who has been a source of strength. I dont really keep in touch with the rest of the family. and I definately dont share my illnesses with them. No one cared when I was in the hospital several times last yr with my fundoplication surgery and the complications from that and the Kidney Stones and the surgery for them and then the complications from that except my mom. So to heck with all them. I just mind my business and dont tell them anything.

    Thanks for responding. <<<HUGS>>>

    [This Message was Edited on 09/07/2006]
  4. Joshuaalpha

    Joshuaalpha New Member

    I am lucky my mother has the illness. well the rest of the family just thinks she is %#$%ed up and lazy..... I know better now..... as I used to think the same of her.
    :( I hate describing the illness to other people.
    It;s a real pain. I just tell them I am like an old man in his 80's in bad shape and to not expect much of me.

    I still have my str for a short time which is weird. I have a big probl:ems with the males in my family. they think I am weak. I had a fight with one and kicked his ass but I was in a manic rage and had a panic attack after and had to go to the hospital. I just can't sustain any sports and it just isn't worth playing cuz I know how I pay after. I just want people to understand that I can't do those dumb male arrogance games anymore but I can still kick your ass if I have to to make a point
  5. myalgiamania

    myalgiamania New Member

    people have such an awful outlook on life in the US. everyone is jealous of everyone else. knowone wants to give anyone a break.

    Example: we lived in Mass. when my first son was born. i was a resident manager of a storage facility. my apartment was attached to the office so of course my baby was with me all of the time. customers would come in and i'd be changing my sons diaper. they would get so mad and impatient and i would feel so guilty.

    we moved to st. thomas in the virgin islands doing the same work. my second son was born. i'd be changing his diapers or taking care of him in some way. people (notice i said people instead of customers) would come in and i'd say "i'll be right with you" they would say "take your time mon (island talk) your baby comes first ya know"

    i never wanted to move back here, my husband did. we now live in florida, which is a better area for politness if you find the right city. we now live in cape coral.

    i feel people in other countries respect life because it is not such a push and shove society. the greed factor here is awful.

    well my son just had a seizure. they think it's from a sleep disorder and maybe taking energy drinks. the church group he hangs out with has never once made him feel bad about it. in fact, they have done so much for our family.
    i almost feel like i'm back in the islands.

    i hope things get better for you and your husband. i will say a prayer for you

    Good Luck and God Bless.
  6. Butterfly_of_grace

    Butterfly_of_grace New Member

    Thank you so much for sharing your stories. Im glad Im not alone but I also dont wish this on others thast for sure. Anyway, we can all support one another.

    Myaliamania...LOVE the name...and well, maybe we should move to the virgin islands LOL! I would absolutely die to live near the pcean in the warmth all yr long. That would be a dream come true.
    I think you are so right about the US and the majority of the population being self-centered, high paced, judgemental and non caring.
    Its funny...we are a blended family...we are truly blessed that its works for us because the majority of blened families have a tough time (believe me, we have our struggles its not easy, but we get thru then together as a whole unit). People Judge us because of that as well. Something we are so proud of yet people think we are "trash" or something because hubby and I work our butts off at blue collar jobs just to do the best we can to raise four healthy and happy children. We live in a small home...all 6 of us and one bathroom. All I ever hear (even from friends YES) is "OMG How can you raise those poor kids in such a small home and only one bathroom? OMG thats horrible". Like we are some bad parents and we torture our children. We have a beautiful little home and unfortunately the taxes are high and raising 4 kids is NOT cheap so again we do the best we can. Now add in both of us having illnesses and people REALLY judge. Its aweful. In my families case, my sister makes a six figure salary ($110,000 a yr to be exact and a College and Masters Degree) and has one son who is 3 (she is 44). Myabe she has a nicer home and fancy cars but at leats Im hear for our children and they arent dumped in child care 10 - 12 hours every day and also she works weekends alot so she never sees him. She also has a horrible abusive marriage she will never leave even though she has financial stability, so I think she is jealous because I left my first marriage which was toxic, for my childrens well being and our happiness without a penny to my name nor did I work for 12 I had NO IDEA where I would end up. Bottom line...shes richer, Im stronger...thers the jealousy.

    Anyway, Im rambling again.
    Thanks again. HUGS to you guys! Im glad you are sharing with me.
    [This Message was Edited on 09/07/2006]
  7. A dr. once when I told him I had fibro , said," oh fibromyalgia thats just a muscle problem". JUST! IDIOTS!
  8. hob

    hob New Member

    it is not an easy decsion to say or not say what you deal with on a day to day basis. I have found that people treat me differently when they know and when they don't I am "normal". It worries me however because I just started a new job a little over a month ago and was sick in bed the last two days because of my fibro. I know it reflects badly on me but what can I do. If I tell my boss I don't think he would be supportive like others I have had in the past. So I believe that it depends on you, your boss and your comfort level. I have found that if I take a less stressful job life is a little bit easier at work.
  9. myalgiamania

    myalgiamania New Member

    you sound a lot like me. my seetie pie hubby and i are on our second marriage although we never had custody of his girls. not a very good situation...i tried but there were many conflicts. so i'm just my two teenage boys Cody(16) and Jake(14)...both are my sweethearts.

    yes, they were island boys. i think thats why they have such mellow and kind personalities. island people are so genuine. if you walk into a doctors office everyone in the waiting room says "Good Morning". i almost had a heart attack the first time it happened. i'm from new england where even people you grew up with don't say hi if you pass them on the street. in fact, i always felt like i had to look at the ground if i passed anyone.

    if we ever get some money, we want to take a trip back there. that was really our home! so many many friends. even strangers felt like friends. we visited almost all of the islands in the chain and even lived in Trinidad for awhile. every island has it's own unique beauty and very special island people. on Tortola in the british virgin islands, you could be driving by a house and outside they would have a little tiki hut stand with rum, juice,etc. well you make yourself a drink and put the money in a cup.i could write a book about this kind of stuff.

    where could you find that kind of honesty in the states.
    i'm getting home sick for my island home under the sun!

    I hope you find this interesting. it's not that difficult to find work there. the water is so blue. the weather stays the same all year long. you'd love it.


    [This Message was Edited on 09/07/2006]
  10. 3dox

    3dox New Member

    Hi! i haven't worked in several years, and am still VERY nervous about trying to work again, knowing how bad just doing laundry can make me feel! And then knowing that most people haven't even heard of fibromyalgia makes THAT an interesting subject to deal with--but you're gonna need some extra time off at some point-- what a quandary!

    We're also blue collar people in an area with much less of that than there used to be (we're in the San Fran bay area of California) struggling along also-- i've put in for disability, we'll see what happens with that-- i've registered with a temp agency, and i have tried to explain to them how the fm affects me so they'll understand the limitations for jobs. i've found it fairly useful to just matter-of-factly tell someone, "well, you know when you have that achy body flu? It's like that--all the time. Or like you just had a really hard workout? Like that, but without the benefit." Sometimes people get it, sometimes i think they don't, because i don't look any different than anyone else! Nothing obviously wrong--

    My doctor even looked surprised when i was in (for the umpteenth time) and said "could it be fibromyalgia?" and she started poking the tenderpoints and YES they were tender--

    It sure is frustrating.

    I'll be curious to see how the new job goes! Thanks for your vulnerability--

    And, oh--we are a selfish nation, overall. Sad to say, but that seems to be obvious to much of the rest of the world as well. i have a theory about that--because we are a young nation, i think we're in our adolescence as a nation, and that tends to be a bit self involved, right?

    Just a thought.
    [This Message was Edited on 09/07/2006]
  11. MsE

    MsE New Member

    I am still trying to develop a tough enough hide so that the belittling remarks and condescending looks don't bother me. Even after all these years battling this illness, I still, now and then, hear about CFIDS being "mental" and "a made up illness for psychosomatic problem people" or I see that look--"the sneer"--flit across the faces of those who don't say what they are thinking but manage to get their very negative view across silently. Some doctors are especially adept at "the sneer."

    The solution? I voice my opinions on this board, with my sister who has MS, and with one friend who has her own package of hurts and truly understands. Other than that, CFIDS is not something I mention.

    I used to try to educate people about the illness; not any more.

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