The Sad Truth About this Illness

Discussion in 'Fibromyalgia Main Forum' started by Elisa, May 21, 2010.

  1. Elisa

    Elisa Member

    Hi all,

    I guess i just need to tell my friends here what happened...

    I have had this illness for 14 yrs. I have battled to stay alive. I had a fever for 3 yrs straight, unspeakable pain, weakness so severe I lay on my floor hours a day - respiratory problems and automomic/heart issues. So I've seen and experienced a lot. In the last several mos I have lost 20 lbs and am now unable to swallow. But all that and it is the responses on disbelieving family and friends that bothers and hurts me most.

    Today I found out that my Mother (while I was in the ER a few wks ago) believes that I "do it all" for attention...ATTENTION!

    When I heard this I was floored in a way that I can not even explain.

    There is no question that my family is not a good model of support. When i need something no one cares - no matter what - just a fact.

    But wow...attention - just didn't see that coming.

    Guess I should have - but to have one's own Mother say this to a friend - when one is in the ER this sick...there are no words. Just grief...very very bad sadness and GRIEF.

    So there it is...I got it out - needed to - have been crying and building a mountain of Kleenex today.

    I pray that no matter how sick I get I never hurt a hurting or sick person this way EVER.

    This illness is so bad that (some) of our own family disbelieves us. That just makes the burden so much heavier - and to be honest it is not good for us when seeking medical care/help. I now wonder how many times my Mother has said this to doctors etc.

    All for now and God Bless,


    [This Message was Edited on 05/21/2010]
  2. heapsreal

    heapsreal New Member

    hi elisa,
    Your not alone, alot of us dont tell anyone due to such misunderstandings of cfs/fm, but all of us here no what your going through, its good to have a place like this to have a winge and a whine amoungst others who walk in the same shoes.

    Dont be too hard on your family, its hard to understand this invisible illness and hard for them to help when they dont know what to do. Come to boards like this to air your frustrations, dont try to hide your illness from relatives but just let it be, its just to hard to explain to them and not worth losing energy over worrying about it.

    be good.
  3. quanked

    quanked Member

    I think you must be to some degree or how could you have survived your medical problems? You get up everyday and face suffering without familial support--without a lot of things.

    What came to mind when I read your post was a card I just read at the store. I went something like this--Tina is so tough that she has a Bulldog on her poodle skirt. Inside the card it said "You're tougher."

    Tough does not mean that life cannot hurt like hell but it means you get through it.

    I do not know what your family is like, your dd's aside. But your mom sounds pretty harsh and judgemental about your illness. I have a very damaged family and they continue to try to do more damage so I have some idea about living what you are living. It does not get easier with these kinds of people--family or not.

    It is too bad that your mom has to cause you further suffering. It is a sad state of affairs. But clearly, you have survived much already. Don't stop now. If your mom understood the disease she would know that those of us with these dd's are not looking for attention--lol--we do not have the energy it takes to receive attention.

    Take care Elisa.
  4. Misfit101

    Misfit101 New Member

    I would have been shocked as well. Go ahead...accuse me of all kinds of things...but ATTENTION seeking? I guess your mother doesnt understand that were getting the kind of attention no one would want, among other things. You must feel so betrayed by the one person who should be advocating for you. Unfortunately youre not alone there. Go ahead and have that cry...I would be crying too. If we cant have a fix for these DDs please just give us some empathy. I started to say understanding but unless you live with this I dont think you can truly understand. Thats really not asking for too much.
  5. Elisa

    Elisa Member

    Hi All,

    Its amazing there is so much wisdom here - your posts really help so much - so many perspectives, so much spirit, helpful guidance and great support. Like my own cheering section.

    It means so much to me - your messages. Its helpful and reassuring. I have been really devestated by the situation and have a hard time accepting it. Its just so - unreal.

    I pray for he day that this illness and all its facets is known and understood.

    Thank you so much for taking your time and caring to support me - it means so much to me.

    God Bless,

  6. heapsreal

    heapsreal New Member

    What i think is funny/strange about disbelievers is some think we are faking our illness, why would someone fake an illness that alot of people dont believe in, u would pick an illness where u could get lots of benefits etc, not too many benefits to having cfs, thats why i play my cards close to my chest, a day will come when there is a definative test for cfs and i think there will be alot of people (i can think of a few doctors as well, lol) embarrassed or ashamed about not believing us.

    We just have to keep our chins up and battle on,

  7. shari1677

    shari1677 New Member

    I am sending virtual hugs and prayers your way this evening Elisa. I dont know which is worse, having family and friends tell us to our faces that they dont believe us, or behind our back. Either way it hurts....especially when it is our parent.

    My mother has not believed me from the get go (about 5 years ago).

    My thought is, if we were truly doing this for attention - why would we let this go for years, years, years and more years? If we were truly doing this for attention, if it didnt work, wouldnt we just move on?

    It really makes no sense in my eyes.

    Please keep in touch and let us know how you are doing. Do you have emotional support in your area?
  8. terramac

    terramac New Member

    Oh, Elisabeth, Im so sorry.

    It can hurt so much when our own mother can say such a mean thing. You are not alone in this respect. My mother has been guilty of this too. But really, if you think about it, doctors have been know to say the same things. All they are doing is showing their ignorance.

    This is a scientifically documented syndrome. Just because a lot is not known about it, or how to treat it, does not make it unreal. And as the others have said, NO ONE would ever pretend to have such a horrible thing, and definitely not for attention. HA and double HAHA!

    I have decided that people who say such things are really not worth knowing. My life is hard enough, I dont need them bringing me down. So take heart. :) We know its real. We all live with it everyday.
  9. slowdreamer

    slowdreamer New Member

    Dear Elisa,
    The emotional pain you were experiencing would be great.. I am so sorry Elisa.
    I hope you can protect yourself from it happening again and even find a substiute mother..I have been adopting mothers all my life . They were people who wanted to find out what I was about.I believe love is really looking so I gravitated to people who validated me.

    We all have our limitations and I reckon my CFS filters out many people..It is just too hard for them .This is good because I immediately find out peoples character etc.

    Painful experiences such as yours are so damaging to your upregulated Autonomic system so I haope you can avoid it We need to try and keep our nervous system calm...
    I hope you soon experience a joyful connection with an enlightened person to sweep away the grief. There are some out there.
  10. Janalynn

    Janalynn New Member

    That must have felt like a stab in the heart.

    It's obvious that your Mother is not the one for support, so you have to seek others. I know that doesn't help, but just tell yourself that until she is willing to be more open minded she is the one who is missing out on what she could be/should be giving her daughter.

    I'd be sending her any article I could find on your dd, on mothers unconditional love etc. I wouldn't even write a note, just send them to her. But that's just me today. In a few days I might say, forget it....but because it's your Mom and not just an aquantance it's much harder to just ignore.
    Give her something to think about.

    I agree, if you were going to seek out attention, you wouldn't pick this! You'd pick a sympathy-getting condition - not one that you struggle to get support for!

    I doubt that you would ever do that to someone else, even if you hadn't felt the pain yourself.

    Hey...tell her you just learned that what you "have" could be highly contagious and you want to come over and see her.

    see if she thinks you're doing it for attention or if she says no don't come over.

    Cry it out. It's okay!
  11. Elisa

    Elisa Member

    Hi All,

    After reading and re-reading all your wonderful support I realized something - this illness picked the wisest, smartest, kindest people in the world.

    From my heart, thank you for your words...

  12. aftermath

    aftermath New Member

    You need to hang in there.

    Although I am by no means saying that I believe that XMRV is the cause of this illness (although I sure hope so), the developments of this past year provide the only reason I have seen to be optimistic in my 17 years of having this illness.

    Hang in, and donate any space cent you may have to WPI.
    [This Message was Edited on 05/22/2010]
  13. Grammcrkrs

    Grammcrkrs New Member

    Hi Elisabeth...

    This is Gramms..I was on here a long time ago, btw...anyhow.

    My family has also been non-supportive (although my twin and youngest sister have FINALLY come around! I don't know why. Took them over 10 years though.). But, my mom is the worst one!! I've just had to let it go in one ear and out the other. Grief is stressing -- we have enough pain without it. Yes, I probably sound like a tough old bird, but honest! I'm really not! A person just has to toughen themselves where it's necessary.

    I still take her to the doctor SOMETIMES, when she is really desperate for transportation (she's 89 and can't go alone). BUT, I take my sis-in-law now. She pushes the wheelchair, I go along with my walker, if I have to. Otherwise, I wait in the car. And that's how it has to be, whether she likes it or lumps it. (Speaking of pushing--my sisters and I are "pushing" for her to sell that white elephant of a house she has and move in with willing youngest sister.)

    Well, that's my input and I'm sticking to it! lol

    Just had plumbing emergency!! see ya!


  14. New Member

    Sometimes I have a real hard time getting the message I am trying to make, heard by the person I am trying to give it to.So let me give you a few pointers. Use what you like and ignore the rest.

    First off I have gained enough confidence that I have a belief that I am telling the total truth as I see it today.By saying that I have empowerd myself so that I can communicate the reality of this disorder. If I get the non beliving attitude from people I care about I let them know by giving them information on the subject. I.E. Printouts from the net, flyers or folders put out by the drug companys, etc. If that doesn't help then I can offer to take them along to the next Doctors appointment so that they can ask to questions from the professionals.

    If those thing don't work what you have left is a person who you have in your life that has no compassion. At that point in time you can limit the amount of time that you spend with them. (OH! I can't do that It's my Mother!) Yes you can! I have had to do the same things with different people in my family. I just simply tell them that if they chose to continue trying to make me feel small,bad, and wrong, because I am sick. Then please DO NOT call or come around when I feel bad. I don't want to have them disturbed by what is happening to me, and truthfully I don't have the time or energy trying to get them to understand. Please come back another day when I have the energy and the stamina to entertain them the way they expect me to.

    I may not have the physical strength to stand up for myself but belive me I have the mental power to say what needs to be said and when it needs to be said.I have a God given right to have the kind of life that I can be happy living. My body is deteriorateing but I don't have to let my mind go there too. I have been blessed many ways, and this is just another way for me to carry the message that God has given me.That message is I can do anything I chose to do IF I have enough belief and trust in God. He has never failed me.
    But just remember this, nothing you say or do is going to change fact that you are sick. Sooner or later the truth will come out and you will find that a lot of people end up feeling guilty, because they didn't have the faith and belief in you. NOT to mention the egg on thier face.
    [This Message was Edited on 05/23/2010]
    [This Message was Edited on 05/23/2010]
  15. hollie9

    hollie9 New Member

    I've had this for over 14 years and not once has my mother offered to help me. Instead she says "aren't you over that yet?" "You just think you're sick because you don't know positive thinking". She has over all this time never accepted I could really be sick.

    Any attempt I make to educate her, she ignores, firing back with "there are lots of people who have gotten well with your illness, you just aren't doing things right".

    I believe my mother can't allow herself to believe I am sick because then she would have to acknowledge that I will not be able to take care of her in old age.

    I follow my shrink's advice to not read her letters, do not talk to her on the phone, just don't engage at all with her....or else I'm the one who is mentally ill for continuing to take abuse.

    Good luck

  16. slowdreamer

    slowdreamer New Member

    Excuse a chilling thought.....Is there a bit of a pattern here?
    Don't cry much but when I see good mothering I usually cry with joy, I think.

    .Here's some research for the psychoneuroimmunologists...????????

    Please people I do believe ME/CFS is physically based so dont feel threatened or anything.

  17. bigmama2

    bigmama2 New Member

    i am so sorry to hear about how so many of us do not have supportive family. if this stupid illness had one definitive test and also a legitimate name - it would be a whole different story- for some of us. but i am sure even then SOME family members still wouldnt be supportive. my father is not very supportive of my illness. its frustrating to say the least.

    slowdreamer- just fyi- both me and my brother have cfs - and our mother is and always has been very loving, caring, involved, and supportive. we both had very happy childhoods. i am sure plenty of other cfs patients have had happy loving families, as well as plenty of other cfs patients have not.


  18. slowdreamer

    slowdreamer New Member

    Like to see myself as a Truth Seeker so thanks for the feedback Bigmama.
    We do all become supersensitive to the reactions of people I think but Pinks story is still a common one.
  19. skeptik2

    skeptik2 Member

    but, it was my partner who couldn't understand my CFS/ME; until she got it too!

    Then she said, "I'm so sorry...I could not believe any person could have so many
    terrible symptoms and look so well..."

    No one can really understand this illness unless they get it themselves, and all
    that we are close to or intimate with are in great danger of that.

    One either has empathy or not; sometimes educating others about the nature
    of the illness works, but if not, time and science will prove our illness is real
    and serious. The time has actually arrived, and soon the world will know that
    we can be seriously ill and require emergency attention and care. XMRV has
    changed everything.

    Be patient and forgive your mother; the CDC and NIH are to blame
    for all the pain and suffering of millions, and it is to them you should express
    your anger and action.

    Grieve for all of us, Elisa, for we are many who have been harmed.

    Be strong and brave for just a little while longer, ok? Then you will have true
    validation and hopefully more understanding and support from others.

    Hugs A Many

  20. karynwolfe

    karynwolfe New Member

    You know what, deep down inside I bet she blames herself for your illness.

    And if she can just redirect the blame at something you're doing, it makes her feel less tormented. Takes the attention away from herself. It's a shame what people will do to avoid suffering...

    They don't have to understand you. God understands you, even if they never will. And His Love is enough to get us through anything.

    "We are hedged in on every side, troubled and oppressed in every way, but not cramped or crushed; we suffer embarrassments and are perplexed and unable to find a way out, but not driven to despair; we are pursued and persecuted, but not deserted to stand alone; we are struck down to the ground, but never struck out and destroyed." (2 Corinthians 4:8-9)

    Never forget that even if your body continues to fail, you are a survivor. We always get the praise when we're improving, or when we've beat an illness... Sometimes we forget that even when the illness starts to win and takes things away from us, even when we live with the same things day in and day out... We are still survivors, we are still strong. You are amazing.