phobic of doctors: help

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Jul 4, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    I have an appointment with a new naturopath next wednesday. Here's why I'm terrified out of my wits:

    1st doctor, age 13: You have mono. You'll be over it in three weeks. (I never recovered.)

    2nd doctor, age 18: I narrowly miss dying from a drug he prescribed, and spend a week in hell after only two doses. Dad leaves him several messages asking if I need to be taken to the hospital; he doesn't return the calls. I tell the doctor I could have DIED, he laughs and says, "Well, we won't be trying that again." Then he says, "Drugs won't work for you." I think, 'Well then what? Drugs are all you have!' Every time I go in, he has a new theory on what's wrong with me (putting it in the vaguest, scariest terms and not explaining), and I get scareder and scareder every time I go, and sicker and sicker from sitting up in the waiting room and getting dressed. Then he say's it's all probably a brain disfunction, and sends me to doctor number 3.

    3rd doctor: Do you have schiphrenia? No? Then... take some selenium and zinc and you'll be cured of your fatigue in two months tops. (We traveled all the way to Vancouver Island for this garbage. And the guy was a PhD and author of medical texts and a top researcher in Canada.)

    4th doctor: Why aren't you better yet? You're DOING THIS to punish your family. You want to stay a baby and it's time to grow up. (later) You're all better now, your blood test came out fine, so get over yourself and start volunteering. (2006) You're just depressed and you need exercise. You lack willpower.

    5th doctor: You're too young for this disease. You should have a boyfriend.

    6th doctor: You seem fine. You say you're tired?

    acupuncturist: I've been working on you for two months. Why aren't you better yet? You're doing something wrong.

    counsellor: You're suppliments are what's making you sick. And how will you be paying me today?

    friend: If you believe a medical treatment will work, then it will work. If you believe it won't work, then it won't work. (I believed everyone who said they could cure me with all my heart; I even believed them when they told me I was healthy... only to flop bad.)

    herbalist: You're sick becuase you're too intelligent. You're a perfectionist. You think the world should be perfect, and because it isn't, you've DECIDED to sit out. (later) Your problem is only candida, and we can cure you in two months tops, and you'll be totally healthy. (Two months later...) Well, the candida is all gone. [Looks down and too the left and mumbles embarrasedly] You have chronic fatigue syndrome after all... see you in SEVERAL MONTHS.

    grandma: (2002) Sounds like you have lymphoma. (2006) Why aren't you better yet? Those herbs are deadly.

    FFC: The only problem is your thyroid. (I take the suppliments - not even ones that would cause die-off - and react so severely that they advise me to stop taking everything and see a thyroid specialist. I'm way sicker for about three months, with new pain that I didn't have before, and that didn't go away.)

    thyroid specialist: Thyroid doesn't do THIS! I mean, LOOK at you! (Gestures at my lying-down corpse that's too weak to sit up to have my blood pressure taken.)

    endocrinologist: Your hormones are fine. They could not be related to your symptoms. (According to labs, they're way off. I'm not even producing adrenal hormones in any significant ammount, and I have antibodies attacking my thyroid...)

    naturopath: See a psychologist. (later) Nobody has THAT reaction to this medicine. $600 please.

    self, 2006: I'm a nervous wreck at the prospect of seeing a new person. I have always believed that THIS next doc would be able to help me somehow. Now I don't believe it. My strategy for this round is to hope that the new doc can make me feel like I'm 94 instead of 95 - or at least that I will stay as I am now and not get sicker. A little improvement and no decline is all I am willing to put myself out for emotionally at present.

    I can't stand any more of this obscene psycological abuse at the hands of people who are supposed to "do no harm." I am not a coward. I am not a slacker. I'm not an infant trying to mooch off daddy. I'm brave as I can be and I'm bright and I have guts to even think of stepping into the arena again with someone new.

    My fear is beyond control, after all I have been through. A little PTSD perhaps? It's messing up my sleep, my eating, my mood, everything. And what's even worse now is that instead of being content with myself as I am, I want more. And I see how sick I really am. When I call a person and have to hang up because I'm too tired to keep talking, I think to myself, 'If I were healthier, just a LITTLE healthier, I could have talked longer.' Now I'm grieving again.

    And to rub it in, I'll have to cancel an appointment I booked a month in advance in order to see the new doctor, because it was for the same week. I don't mind so much about putting it off. It burns me up that I'm not well enough to go to two appointments in one week. I can't even shower when I want to. I might need to have someone come and bathe me so I can get out to these things, something that I told myself I would never do except as a last resort. I HATE being sick. I HATE being reminded that I'm sick!

    The questionaire the new doctor sent me asked about past emotional traumas, losses, hates and fears, and nervous breakdowns. On every line I have put Doctors on the list. And as for nervous breakdowns, this is about as close as I get. I feel like I'm about to get beaten. I'm tensing up to get hit. This is not something a positive attitude can fix, or a pat on the back, or some dumb platitude, because it's like a phobia of PTSD thing with me.

    And I know now that thinking something will work doesn't do anything for me, because I've been doing it for years. So I guess I just have to endure this state of anxiety for another week. I'm not sure I want to get better if it costs me this much. Just the stress of this appointment is making me sicker already. And I'm tired of hearing about how great she is. That's what I kept hearing about doctor number 4 and doctor number 2... In fact, all the doctors dad's chosen for me have been Big Names in the field. Maybe that's why they hit so hard when they say something bad, or when they don't know how to help.

    You couldn't possibly say anything worse than they have. How can I be less terrified?
    (( )) Shannon
    P.S. I in no way mean to malign doctors. These are just my personal experiences with people who were trying to help and didn't know what to do and did the wrong thing. FFC testing was the best, and I can't fault the FFC doctor on anything. Many of our members are helped by FFC.
    P.P.S. My mother died of medical error at the age of 29. The death certificate was falsified to protect her doctor. The life insurance company "lost" her file, then skipped out the country, and dad had to go back to work in two weeks.[This Message was Edited on 07/04/2006]
  2. musikmaker

    musikmaker New Member

    You message truely pulls at my heart. I wish I could give you some great words of support. I went and read your Bio. You are a positive person. Even your board name is positive. You have to reach down inside and know that you can raise above your fear. I believe there is a Doc out there that can help you. Don't be afraid, this may be the one.

    Like you, I know how lonely this journey we have been sent on is and how painful it is to us emotionally when we are dismissed like you have been.

    Don't give up Shannonsparkles, hold on to the thought that this may be the Doctor who will help you.
  3. kjfms

    kjfms Member

    I wish I could go with you just for the support.

    In all honesty I think you should print out what you typed in your post above and take it to this new physician and let him/her read it.

    Frankly you explained it very well and at this point it could not hurt could it?

    I think it may give this new physician a little insight to better help and understand you (I hope and pray).

    I am sending you all of my best thoughts,

    Karen
    [This Message was Edited on 07/05/2006]
  4. Shannonsparkles

    Shannonsparkles New Member

    Thanks for responding.

    I talked to dad on his cell phone as he was driving home from Kelowna today. I couldn't help crying. He didn't know that I'm this scared. It's hard not to feel helpless. Seeing a new doc is like all the worst moments from the old docs rolled into one.

    Why didn't FFC work for me? Why didn't doctor 4 work, or doctor 2, or any of them?

    There is one doctor who isn't on my list. (When I re-read what I wrote, it sounded like a blooper reel.) She's my CFS specialist here in Calgary. She got me a wheelchair and a disabled parking pass on my first day. It hurts that I can't see her that often. Once a month is about all the outings I can do, if it's a "good" month, and I haven't had to go anywhere else. So I've seen her... twice? I don't know if she will be very helpful, but she's kind. I didn't have to go in proving to her that I wasn't lying.

    Dad's networking for me. He got me a massage therapist who might be able to help, and he would come to the house. Then I wouldn't have to dress or bathe for the appointment. It's so humiliating not being able to bathe. The other day I could just smell myself till I couldn't take it anymore, so I went downstairs to brush my hair to get ready for a bath... and I couldn't even do that. It was too hard to stand up. I've got to bathe tomorrow if I can, because I plan to see the chiropracter on Thursday - another thing that dad says is important, and I just go along with because, hey, who knows? To live is to act.

    I hate this disease. I hate that my life was taken away before I got to have any fun with it. It was mine. What makes me happy now? The sound of the wind in the leaves of the trees accross the street. The night birds that start singing at 4am. Being able to play the guitar lying down. Fresh fruit. Having enough food for the day. Seeing a child run by the window. Seeing the man that rides his bike home from work each day. Anything. Everything I can get. All of you. When anyone asks me whether the cup is half empty or half full, I tell them that the cup is full. The cup is always full. Life does not do anything by halves. I've been content for awhile. Since May I've stopped falling down on the floor when I stand. That's enough.

    I want to write that I'm tough enough for anything. But I'm not. I'm not tough enough to get my heart broken again. That's why I'm not going to hope for anything. I just want to stay where I am (I'm better than average in summer, so it's a good place to try to stay) and to not get worse. That's the most I can hope for. I can't stand perfection being waggled in front of my nose again. If this new naturopath doesn't respect me (and boy do I have the radar to tell by now!) I'm outta there. So, I guess I can say that I'm tough enough not to take a bad doc lying down. When I dumped the herbalist, I felt ten pounds lighter and let out such a whoop!

    I do plan to print out this post about the doctors. One of the questions in the quesionaire was, What was your relationship like with past doctors? I am tired of being blamed. I'm tired of being told that I have a behavior problem. I'm tired of doctors getting frustrated with me when I don't recover on their schedule. I'm tired of people giving up on me. I'm tired of not being respected or valued.

    I had very little self-respect before I came to this board. I thought I WAS misbehaving and punishing my family and all that, and it was terrible. I felr dirty with guilt just for asking them to be quiet, because I thought I was being manipulative to them, like the other doctor told me I was. When I asked one doctor how long it would take me to get better, she said, "You'll stop doing it when it stops being fun." Profound. And I believed her. I believed all of them. And I even believed her when she told me I was finally well.

    I don't believe any of them any more. I don't believe dad anymore when he tells me that this doctor is THE one. Contentment is a good goal, and most days I get there - not by chasing a rainbow that jumps away from me every time I get near it. Most days I can forget that I'm sick. It's not something that consumes me or freaks me out like it used to. This year has been better for me than the years before it in some symptoms, though worse in others.

    I'm grateful to be alive and to have come many miles in my time. I feel I've lived eough for three lifetimes, even though I've been housebound straight out of highschool and have never had a job or learned how to drive or kissed a boy or cooked another souflee. Everybody keeps telling me that I have to get better. (No pressure!) Of course I want that. I want it so much that I can't even stand to think about it.

    It's not a sin to be sick. It's not a crime to be sick. It's not a choice to be sick. It's not a plan to be sick. It just is. Nobody wants to be sick this way. What I want most from the new doctor is for her not to treat me like I've done something wrong on purpose. None of this you-brought-it-on-yourself stuff. That's philosophy - the philosophy of blaming the patient when the doctor is at a loss. If I had cancer, I might be seen as a hero. If I had diabetes, I would be seen as a trooper. If I had AIDS, I would be an icon. I have CFS, and I am treated as a criminal.

    Thanks for the ramble space. It is better to let this all out.
    (( )) Shannon
    P.S. It took three hours to write this! I feel like I should be paying all of you for therapy! lolol ;) (( ))
    [This Message was Edited on 07/05/2006]
  5. Shannonsparkles

    Shannonsparkles New Member

    I will bounce back. I've already bounced back once today. After all the crying. I called my folks (you've seen my Grandpa has cancer thread?) and listened to them. Nothing makes you stronger than supporting someone who needs it. Then I ate cherries and laughed over something stupid. And then I looked out the window until I couldn't think of anything stressful anymore. Maybe my mother dipped me in teflon when I was born.

    Thanks again to anyone taking the time to read this thread. The crisis line guy had only had good docs, and couldn't immagine the stuff we are facing. As I wrote the second part here, I kept thinking about you, Prickles. About how important the work you are doing is. We all admire you for you advocacy campaigns. I would bring you with me if you were in town.

    It's one hour to dawn now, and that cheers me up too. I go to bed at dawn now.

    Time for the bright side, or, as I like to call it, being practical. :) Bare minimums... I get to meet a new human being. I can put this in a novel some day, lololol. ;) If I'm able to open my eyes for the drive, I will see a different set of trees than I usually see. She'll probably want me to stop a lot of my suppliments (docs are dismissive of stuff you didn't buy at their counter), so a few bucks saved and possibly less gagging on pills. I'll get to ride in my smooth and speedy wheelchair. I can say whatever I want, as long as it's not unkind. If she's a jerk, I can laugh about it with all of you guys afterward and know you've been there too. I'll get to go outside. Very likely I will have managed to bathe, so it'll be a good week before I get really gross again, lol. I won't be bored that day. I will meet one more celebrity. And... I will not get sicker. That is the one thing I've made up my mind about.

    I'm so glad you are all here. xx Shannon
  6. PVLady

    PVLady New Member

    You might consider seeing a good therapist. I never could have given that advice before I began seeing one myself and seen how changes can happen.

    All of your traumas are real and you need them validated in a way that will get through to you. Talking to a professional is different.

    When you start with a new medical doctor, it would be nice to give them a clean slate and go forward, letting go of the past.

    I also have had a terrible experience with a few doctors which could be considered traumatic. I am dealing with anxiety and have decided myself to change doctors. I have already seen my new doctor once and I know she is different so I will give her the benefit of the doubt.

    Try to think positive that your new doctor will be very good. If that does not happen, you can always keep looking for a good doctor.

  7. carebelle

    carebelle New Member

    Wow ,All I can say is I'm sorry life has been so hard on you.I have trouble dealing with doctors also .

    About 29 years ago I was Preg. with my middle son .My husband and I plan this preg.because we wanted our children to be close together in age.

    When I was about 7 months into preg.I started haveing very painful stomach pains.I mean they were so bad I would fall to my knees with pain.

    I went to my OBGYN because I was afraid something was wrong with my baby .

    Well he told me it was just because I did not want my baby.He said I was just haveing an emotional Preg. nothing was wrong with me.

    I had two or more months of sever pain ,throwing up buckets of green and black bile.The pain would drop me to the floor.

    I was taken to the emergency room and my obgyn put me in the hospital .hooked me up to IV's and put me into a small room by myself and refused to let ANYONE in to see me.They gave me med's to keep me asleep.

    They would not give me a buzzer to call the nurses when my pain was so bad it would wake me up .I continued to throw up bile.

    Finely after I think 3 days I ask why my husband had not come to see me .They told me he was not aloud in until I got myself better.

    Well I got up out of the bed and went to the nurses station and made them call my husband.He was a mess.He said that the Doctors advised him that He should stay away and give me time to deal with not wanting my child.

    (WE were both very young and thought we could beleave the doctors)Anyhow

    I made them take the IV out or I was going to .My husband came to get me.My parents came to town and we went back to their home.

    I suffered so bad emotionally also from what they said and did to me.

    Anyhow I gave birth to my Son ,my old obgyn from my first child delivered my baby.The morning after they ran all kinds of test and guess what ?

    It was Gull Stones I had emergency surgery to remove my gulblatter.I had 53 tiny stones in it.PAINFUL does not say enough.

    My Doctor said that they should have known because of my throwing up bile.

    Well the only good thing that ever came from that was my husband decided he was going to go to Physician Assistant school .He wanted to be sure he'd know what to do if I was ever sick again.

    It takes alot for me to go to a doctor I totally understand your feelings.But there are good ones out there.

    We just have to seek them out.And be sure to tell others when we find a good one or a bad one.

    Hang in there sounds like you are due for a turn at a good one.
    Sorry this is so long I wanted to share my story with you if I was able to write as good as you, I'd write it and make a TV movie out of my experence.
  8. TAM

    TAM New Member

    SO VERY SORRY TO HEAR ABOUT ALL THE RUDE DOCTORS YOU HAVE HAVE SEEN. I HAVE HAD MY FAIR SHARE OF DOCTORS WHO ARE RUDE, AND YOU WONDER HOW IN THE WORLD DID THEY GET CERTIFIED TO BECOME A DOCTOR. GEEZ!

    IT SURE IS ABOUT TIME FOR YOU TO FIND A GOOD DOCTOR, IF ANYONE DESERVES A BREAK ITS YOU. AND I ALSO CAN'T BELIEVE THE DOCTORS WHO STATE YOUR TO YOUNG TO HAVE THIS OR THAT. ARE THEY FROM PLANET MARS?? CHILDREN HAVE DIED OF CANCER AND OTHER TERRIBLE ILLNESS AS YOUNG AS TWO AND EVEN YOUNGER,YOU JUST WANT TO SHAKE SOME BRAINS INTO THEM. AGE HAS NOTHING TO DO WITH ILLNESS, YOU CAN GET AN ILLNESS AS A CHILD.

    I FEEL FOR YOU. I REALLY HOPE THAT SOON YOU FIND THE RIGHT DOCTOR WHO CAN HELP YOU. DON'T GIVE UP I MEAN I UNDERSTAND YOU NOT WANTING TO EVER GO TO ANOTHER DOCTOR IN YOUR LIFE, THE ONES YOU HAVE SEEN END UP MAKING YOUR PAIN WORSE BY ADDED UNDO STRESS BY TELLING YOU YOU SHOULD BE BETTER, ITS ALL IN YOUR HEAD. HOWEVER THERE ARE SOME VERY GOOD UNDERSTANDING CARING DOCTORS OUT THERE. NOT MANY I KNOW THEY ARE FEW AND FAR BETWEEN.

    JUST KNOW IF ANY OF THOSE JERK DOCTORS HAD YOUR PAIN FOR A DAY EVEN A HALF HOUR YOU BETTER BELIEVE THEY WOULD RUN TO FIND A CURE OR MEDICATION TO HELP THERE PAIN. I WISH YOU GOOD LUCK./ AND MAY YOU BE BLESSED AT BEING ABLE TO FIND A GOOD DOCTOR.
    TAMMY
  9. Angelimbo

    Angelimbo New Member

    Shannon, I am not up to posting much.....I rarely am.

    But I want you to HEAR me.....

    I kid you not, reading what you have written here, each new line, each thought.....it is almost spooky how it feels like reading my own diary....IF I had been keeping up with it! (lol)

    I have been sick all my life, and I am almost 53.

    It is just insane, what we are put through, and I am in total empathy for how you are feeling right now.

    I, too, will be seeing "yet another" new doctor this coming Monday. I have to drive 40 miles round trip to see him. I have not driven on the highways in nearly 5 years.

    I go through the same crippling anxiety before every doctor's appointment.....not just the new ones.

    And I am going through it now! Seeing this new doc, (and some other huge recent stresses, like my first SSDI review, death in the family).....all this is hitting me at once, and I am so afraid to go through this roller coaster again.

    PTSD is most definitely what we end up with, and that is mostly due to exposure to docs, in many of our cases!

    I hope you GET in your heart, that your post was so meaningful and timely for me. And, I absolutely share your fears and anxieties.

    You are so articulate and intelligent, and you have such a fighting spirit, despite the way you feel at the moment.

    It is sad, geez, it is so frickin sad.....that we have to continually go through this.

    But we are still practical....so we just have to shake our heads, and just.....get on with it.

    I know.....that is so easy to say, but not easy to do....especially over and over and over!

    My prayers are SO with you, and I hope you will pray for me as well, for my appointment on Monday.

    I wish you........and all suffering.....only the best.

    Angie
  10. Shannonsparkles

    Shannonsparkles New Member

    Thank you for being so understanding. It helps me not to beat myself up for being afraid.

    I printed your post and am saving it, Angelimbo. It makes me teary how kind you are, and how alike we are in the problems we are facing. Thank you.

    Later today I'll give dad the ND's questionaire and some labs and stuff to take to her. I came back here to consider printing out my posts (and some of your posts too) in this thread. It was too painful to read through it at first. Then I was deflated and thought it couldn't make a difference. If she's a jerk, can I make her change? Or would I only be antagonizing her?

    I'll give you a little background on this one, as much as I know. She's been helping dad with some back problems for about half a year now. He says he would date her the instant she said yes to it. Dad would talk about me every time he went in to see her. Finally, she offered to treat me. She said, "Shannon's suffered enough."

    That indicates compassion, but it also tells me she's very sure of herself. When people are sure of themselves and their treatment doesn't work, it becomes the patient's fault that they did not attain wellness in the time proscribed.

    I'm trying to compose an introductory letter that will prevent her from being a jerk to me. I don't know how to do this in a kind way. I'm not going to give the blow-by-blow of the past doctors that I did in the opening of the thread. They don't matter anymore. It would just be mean. What I want to do is to emphasise setting reasonable expectations and treating me respectfully.

    Doctors look at me like I've done something wrong. I've had a lot of emotional trauma in my past as well, and it's all to easy to blame my symptoms on that...

    Okay, here I broke off and started writing the thing. And it's scathing. It's five pages long. Took three hours. I couldn't help it. I'm too afraid of getting hurt not to get my pincers up.
    ((love & exhausted by this stuff!)) Shannon
    [This Message was Edited on 07/07/2006]
  11. Angelimbo

    Angelimbo New Member

    Shannon, I am sorry to be so slow to get back to you. I have been in a pretty bad flare....among other things.

    I am glad that my post was comforting and validating to you. I know what it feel like to need that!

    Your composing an introductory letter is OH SO familiar to me!!! Been there, done that!

    I know I need to prepare for this upcoming appointment on Monday, but, at least so far, I am resolving not to wear myself out doing that this time.

    However, knowing me, as the anxiety builds and the day gets closer, I could easily go into another "preparing for the doctor's appointment" frenzy! I am really going to try not to do that this time.

    However, one difference for me is that this will be the first time that I have complained to one doctor about another, or even let on that I had been abused or neglected by another doctor.

    I told him on the phone my most specific complaint about my last doc, which really boils down to the fact that, once I became completely disabled and no longer had good insurance...and even after I had Medicare...she just didn't want to treat me anymore, because I was no longer a "cash cow".

    So, he knows pretty much where I am coming from.....or, at least he did when we talked on the phone. I will probably have to "remind" him, because that has been at least a couple of months ago!!! (Yes, it took me that long to get up the nerve to make the appointment!)

    But even though he was reassuring on the phone, it's so hard to forget what has happened in the past.

    I have felt initially "reassured" several times before....including my last doc, who I found because she spoke at the local CFIDS/FMS support group!!! I know now, she was just trolling for "cash cows".

    Anyway....

    I am having a hard time "reading" how you are feeling about this new doc, and the fact that she treated your dad?

    I get the feeling from reading your posts on this thread, that you and I have lots of things in common. I am not always as brave as you are in posting here about some of them.....some of the things that have been done to me and to other members of my family....by the medical profession. Dark, Dark!

    I need to go to bed now....sinking fast, all of a sudden! (Imagine that!)

    But please know my thoughts are with you, and I do understand the anxiety you are feeling.

    It helps so much to have places like this (and people like you)!

    Soft, gentle, warm hugs!

    Angie

    (edited to add the below request)

    Shannon, I would like to know if you would have any objection to my copying your original post, to share on another message board I participate in? I would not include your screen name, or tell where I read your post. But I would like to share it, because it's about validation. And I would not do it without asking for your permission first.
    [This Message was Edited on 07/07/2006]