I cannot fake health RANT

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Mar 26, 2009.

  1. TeaBisqit

    TeaBisqit Member

    My aunt told me tonight that my uncle, the doctor, told my mother many times over the years that I'm faking being sick and she said he was nasty about it. First of all, this "doctor" has barely seen me in my entire life. He lived upstate from where we lived, like hours and hours away. Once in a blue moon, we would see him at a relative's wedding or on some holiday, but it was rare. He is not a GP, he's a hematologist. He usually treats cancer patients. How he can dare say I'm faking it when he doesn't know me and has barely seen me in my entire life is beyond me.

    When I first got sick, my mother asked him to run the blood work on me. It showed the high levels of EBV and HHV6, they were so high that a doctor I went to a few months after that who saw the results said he didn't know how I was walking around at all with levels that high. I also showed autoimmune factor in my bloodwork and Hashimoto's at that time which was NOT told to me by my uncle the supposed doctor. My uncle said all my blood work was normal, which it wasn't. And he failed to diagnose my advanced Lyme.

    I know I shouldn't get myself so upset now, since this was way back when. But I am angry as hell. Especially since in the last two years since my mother died he has been at it again with acting like I'm mentally ill and not physically ill. He is the one with a severe mental problem, not me.

    I cannot fake antibodies to my own thyroid. I cannot fake that my thyroid is enlarged. I cannot fake constant fevers and a weakening of the left ventricle of my heart that was discovered at a hospital. I cannot fake an enlarged spleen or swollen glands or enlarged liver. I cannot fake sudden drops in blood pressure that do not go back up and irregular heartbeat from that. I cannot fake my low energy or dizziness. I cannot fake all the cognitive symptoms. Really, most of the time, I have the audio processing disorder and I don't understand a word that is being said to me. I have short term memory loss and forget things. Light and sound sensitivity. And I haven't even mentioned all the stomach problems with the acid reflux/GERD and sometimes the colitis like cramps. Irregular periods, too. Can I fake blood??? Or how about when I get HHV6 breakouts on the back of my tongue and I have trouble speaking from that and sometimes it actually bleeds. The list goes on. I'm probably leaving out some of my symptoms. The point is, I cannot fake these things.

    I would LOVE to be able to fake being healthy. I wish I could. Maybe then I could work and actually have a life. But I'm sorry, I cannot fake being healthy to please an ignorant, stupid evil family.

    There is no motivation for me to fake being sick. I get in a below poverty level check. I am alone, stuck housebound nearly all the time. I only leave the house to foodshop or for the occasional errand or doctor's visit. Each trip leaves me in so much pain and stiffness and fatigue and a flare that it is never worth it. I have no one to impress or whine to. I am alone with my cat, and my cat sleeps most of the time. And I'm not a whiner. I'm the type who stays alone when I don't feel well. And since I never feel well, I'm always alone.

    It's just so unbelievably evil, cruel and sick to accuse someone of faking their illness, particularly one as disabling as this one. I've lost everything in my life. My ability to work or go to school. Friends, dating, relatives, all gone. I've lost homes, I've just plain lost everything to this disease. Where this idiot who is supposed to be an educated doctor gets off telling the rest of my family that I'm faking being so ill, it's just unbelievable. And the worst part is, they believe him because he's the "doctor". So they follow his lead and act like I'm just nuts.

    I don't have anything to do with them now, but it's just really upsetting to hear about it. My aunt didn't mean to upset me tonight, but hearing about it really did.
  2. jennah

    jennah New Member

    I have resigned myself to the thinking that it just no longer matters whether your loved ones believe or not. You will not win the battle and you will waste much of the precious little energy you do have trying to convince skeptical people and trying to defend yourself.

    At the end of the day, what your Uncle believes will not change any of the chronic health problems you have. You can choose to let him get the best of you and become upset over it; or you can try and just let it go, because as you have stated he really isn't a close part of your daily life and honestly, who cares what he thinks he knows...you know what you know and what you live every day.

    I think most of us deal with this subject in one way or another and it is never an easy thing. I myself am dealing with the worse flare I have endured so far, after being able to maintain and function pretty good for a good couple of years. In the snap of the fingers I crashed and for the past 6 weeks have been stuck in nonfunctioning h*ll.

    The past week or so I have started some new medications and am trying to get out of the house and push to get some things taken care of that I have ignored throughout this ordeal. I stopped by a friends shop who I have worked with on and off for several years; we are very good friends and she is very aware of my illness. Upon updating her on the bad last couple of months I have been coping with, I was asked what was stressing me out so much that I couldn't function.....I replied it is a chronic fatigue issue most of all and not something that is caused by stress. Just totalling not being able to function at all....physically or cognitively.

    She then proceeded to ask me how much of this problem I thought was due to the vicodin I take...basically implying that I had a drug problem is how I felt and given that I might take anywhere from 1 to 3 5mg pills a day, and sometimes none on other days, I am pretty sure that is not the issue. Other days I may take ibuprofin and/pr tramadol. I never have needed to take alot of something though and I have never had an issue with tolerance or addiction. Also throughout this past flare I have barely taken any meds because I have spent so much time sleeping.

    She then carried on about just needing to keep going and having no choice to stop...gotta keep going. It didn't matter that this was a PHYSICAL ILLNESS keeping me from being able to function, in her opinion I just needed to keep going. She wanted to know why I didn't call her to get me out of the house, she had work I could have done for her. I laughed and said, what would I have been able to do, wander around in circles for you because my brain can't function enough to know where to begin? (we work within the estate sale business and there is no way I could have handles the organizational skill required to help get an estate ready.)

    I know this is long, but I hope it helps you see that no matter what the issue of non-belief is always going to be a part of this disease. I left her shop today on the verge of tears, however I told myself once in the vehicle it just really doesn't matter what she thinks because she is not living my life and her opinions are really not going to have any impact on my life either. I will just make it a point to distance myself from the friendship in the future.

    [This Message was Edited on 03/26/2009]
  3. spacee

    spacee Member

    Would it help to report him to the medical board? Maybe yes, maybe no. He is clearly still causing you mental anquish and in your physical state, you do not need that.

    I think some sort of restraining order, legal intervention to prevent him from giving his opinion which is clearly 'his opinion" and wrong. But I suppose it would cost money to do that. I mean he is injuring you.

    I have so backed off from all my relatives except for my one brother who has retired early because of cervical neck pain. They don't understand me...or care. And it is of no use to continue. But you are alone and can't seem to get "away" from them. Whew.

    Early on when I was first ill, a man told my husband that I was not sick and my husband believed him. He would yell at me to 'get out of bed, you are not sick'. Despite lab work to prove otherwise. It cause a huge strain on our marriage for years. Partly because my husband comes from a family who does not "acknowledge illness".."mind over matter" sort of thing...so that man really "fed'" that part of my husband's thought process.

    So, I know, in part of how you feel. Even when I was being studied at the NIH, expected to die within 5 years, my husband's family refused to acknowledge I was sick. Lunacy. They are all dead as of last year and it has been a great relief.

    You are a strong person for making it alone, without funds and with just your kitty. You do have my total sympathy.

  4. shari1677

    shari1677 New Member

    I am right there with you both on family and friends....and how they can be so inconsiderate. My mother, sisters and very best friend do not believe me. They also say things like "you're spoiled", "just push yourself", "why aren't you fighting harder", I could go on and on.

    What's really strange, MY EX-HUSBAND believes me. He seems to be the only one. Wierd.
  5. TeaBisqit

    TeaBisqit Member

    It really helps to know most everyone here goes through the same thing. I think what kills me the most is that he singlehandedly destroyed all my family relationships as well as my relationship with my pediatrician whom I had been going to since I was a baby and then became my GP. Whatever this monster said to my doc, he convinced him I wasn't sick. And my doc didn't want to treat me anymore. And my uncle ruined all my family relationships. They believe him because he's a doctor. It's just awful.

    Alone is better. I might end up with no tv and having to eat a can of something for dinner, but at least I won't be tortured by them anymore.
  6. bigmama2

    bigmama2 New Member

    you have my total sympathy also.

    that sucks that your family is so stupid and non caring.

    hugs to you
  7. Doober

    Doober New Member

    bad that you have to deal with this. Especially from someone in your family that is a DR. If he does work with Cancer pantients, I would think that this person would have a high level of compasion and understanding????

    It is amazing that family members would treat friends and strangers better than they treat their own family.

    What I would like to know is what the success rate of your uncle's patients are??? I mean, if he tells you that your blood work was normal, he either didn't bother to read the results, doesn't care, or is not that well trained as a doctor to read basic results???? This kind of thing scares me as far as the medical field.

    We need our families to tell us, "hey, you can get through the day", Or something else possitive, most of us are not looking to be babied, or have everything done for us like we are members of the royal family.

    Just understanding and compasion is all we need. We don't need to be treated as if we are lazy, unmotivated or like little children.

    As some posts have mentioned this before, we do not need toxic relationships in our lives.

    Personally, I am content with being left alone and not bothered, if I am around people who are negative, I mentally tune them out.

    I guess I am lucky in the sense that there are a few women on my wife's side of the family who also suffer from FM, and this has eliminated the negative comments and worthless advice from any family members and I also try to keep in touch with them as often as I can.

    I joined face book recently and they are there as well and now I get to chat online with them now.

    We just need to surround ourselves with compasionate and understanding people and ignore the others who bring us down.

    You have to remember, it is what you think about yourself is all that matters. What others say or think are just words and most of these people are "Talkers" and not "Doers".

    Everyone has opinions and ideas, but unless they act upon their words, they are meaningless as far as I am concerned. If we listen to people tell us the same thing over and over again, we may up up believing these words and it is not worth the stress that takes a toll on our bodies.

    SO, keep your head up high, do the best that you can and let the words bounce off even if they are harsh.

  8. Janalynn

    Janalynn New Member

    You've been dealing with this for far too long.... and it's been far too hurtful for you to keep dealing with it.
    Take a deep breath - realize that you know what you are dealing with. You don't need their affirmation.

    I know it's hard - especially when it continues to be brought up. With family it's very difficult to "forget about it", but you don't have to prove it to them any longer - to anyone for that matter. Of course you're not faking it. "They" (anyone who is ignorant to believe that you are) are stuck in their close mindedness. What a loss for them not to have you fully and completely in their lives.

    Take another deep breath now. Breathe in then....Blow them right away.... Blow all of that negatively out...

    If anyone brings that up to you again...kindly tell them, you will not listen any longer. You have a life to live and there is no room for such unkindness.

    Treat yourself to someone that relaxes you today. Whether it's laying on the couch with a good movie, having an ice cream or whatever... get all of that 'crap' out of your mind.
    kay? =)

  9. lgp

    lgp Well-Known Member

    I will be brief since you have gotten so much wonderful advise from all you friends right here. we have all walked your walk with family and friends at one time or another.

    Do not spend another single, precious moment of your life expending energy on these thoughtless shrews.

    You are very young, and when you get a bit older, believe it or not you will eventually care less about what they say or think. Truly, it is one of the best feaures of getting older!!

    The next time your insensitive aunt brings up the subject of your 'doctor' uncle and his opinions, be very direct and say to her, "If I respected/valued his opinion, I'd care. Next subject."

    You need what ever energy you have for yourself my sweet. Don't dare waste it on them.

  10. jasminetee

    jasminetee Member

    I hate that tea, it is the worst! The problem too is that it's very hard to just forget and move on when it keeps coming back in your face. It's even worse in your case because you're alone and your dear mother died. I feel so bad about your situation. That doctor/Uncle of yours is a real jerk. He makes me mad!

    I suggest screening your calls and cutting off anyone who tries to make you feel badly about having CFS. I know how hard that is to do but it's worth it for peace of mind. It's worked for me ;P

    In my mind, your aunt passing on that info qualifies her as a cut-off. Ask yourself, would you tell a friend or relative that someone in the family didn't believe them if the shoe was on the other foot? I doubt it. I know I wouldn't. It's called compassion and tact and I know you have both.

    When people pass on info like that it's like they're saying they really feel that way too but "Oh, I didn't say it, I'm just saying he did." Yeah, right. How much awareness and sensitivity does it take for someone to realize that that's going to be hurtful?

    I have some strategies I'll share that I've found helpful:

    One is that as soon as I think of the person and the rude things they've said I think to myself, "I forgive him/her." 3 times. Then release it. After a year or so it has calmed down my anger. I don't actually tell them or anyone else, this is forgiveness of the heart to heal myself, not reconciliation with an abusive/negative person.

    I also say a prayer if the thoughts persistently repeat:

    "Lord, please help the people in my life learn to be open-minded and compassionate." and then I learned from Byron Katie to turn it around:

    "Lord, please help me learn to be open-minded and compassionate."

    I also think of Let go and Let God and the Serenity Prayer.

    Here are some comeback lines I practice too:

    "Ignorance is bliss."

    "He can believe what he wants but that won't change the facts."

    "I don't see how that's any of your business."

    "I'm not gonna let anyone try to make me feel badly about something that is NOT my fault."

    "Some day maybe I'll feel as well as I look."

    Hugs to you tea and hang in there. You are being unfairly prosecuted but remember we all understand here.


  11. TeaBisqit

    TeaBisqit Member

    To not look sick is a curse. Sometimes I think it would be better if we looked like Night of the Living Dead. At least people would take it seriously.