sick of the stigma

Discussion in 'Fibromyalgia Main Forum' started by lin21, Dec 26, 2006.

  1. lin21

    lin21 New Member

    I am just so tired of everyone talking about people like us. That we are drug addicts, that we are lazy , and everything else. What is wrong with people , what would they do if they got up one day and lost everything . That's exactly what happened to me and I'm sure most of us on this board. We are people not animals and we are not mental cases either.
    I remember when I was first diagnosed my darling sil said 'that's depression get over it".
  2. Catseye

    Catseye Member

    My doctor also said cfs didn't exist and that I should see a psychiatrist for depression, even though I tried to insist I wasn't depressed. I said "I'm perfectly happy, I just can't get up!" He also said he didn't think hep c was a reason for disability, either, even though he could plainly see I couldn't walk into his office without help from my husband.

    I understood from my lawyer that I better cover all bases when it came to filing a claim so I even went to a couple of psyciatrists, eagerly hoping maybe they could prove my mind was perfect and that I was, in fact, the victim of a "broken body". Maybe they even have some good suggestions, I figured, after all, they're doctors.

    Well, they both said all they could do was diagnose me with depression. One of them ASKED me if I wanted him to diagnose me with depression and the other tried to convince me that I was. I had told her I don't talk to my friends anymore because I can't talk for more than a couple of minutes or I get super tired. She kept saying it's because I've "lost interest" in talking. I said, "no, I want to talk to my friends but I get carried away and I've crashed too many times from it so I just avoid it right now".

    She, of course, said I was refusing treatment because I didn't want the antidepressants she was trying to force on me. I didn't tell her I knew that she gets "incentives" from the drug companies depending on how much she pushes that drug and so I just watched her make an ass of herself, trying to convince me I was unhappy with life and had low self-esteem issues which were making me refuse treatment so I could continue to command attention from everyone around me. It was kind of amusing, actually. It looked like SHE was the one who needed a psychiatrist. Then I got really irked when I got handed a $150 bill! I bit my lip, paid it and ran like hell out of there.

    I ended up winning my disability, though. The judge asked me "I see here that you've been to see psychiatrists, weren't you diagnosed with depression?" I actually came back with "well, my doctor had me taking antidepressants when I was doing the chemotherapy and they made me feel worse then, so I didn't want to try them again." And that was the end of it! I was surprised my brain fog didn't prevent me from making that statement. Then I got my letter that I won!

    But every time I go to the doc about some symtpoms I want tested, I still get the lecture and the "look" and the referral to a psychiatrist. The latest thing was, "you're spending too much time on the internet finding out all these things that are wrong with you and now you are a hypochondriac".

    HA! How do you defend against that?!

    best wishes,

  3. TeaBisqit

    TeaBisqit Member

    The name is killing all of us. It's a horrible, stupid name. Fibromyalgia is better than Chronic Fatigue as a name, but too many people have also called Fibro a made up disease so it isn't believed. We need a real name.

    When I first got sick, I had an Uncle who was incredibly verbally abusive to me. He said only depressed people get sick. He insisted I was just depressed. It was so bad, I remember crying alot. Much later, he apologized and even I think paid some money toward my seeing a doctor, but it was too late. I have never forgiven him and I never will. Attacking someone who is sick, is just so unforgivable. I don't care that I don't look that sick, if I say I am, I am. People can be very, very cruel.
  4. Catseye

    Catseye Member

    Fibromyalgia I always thought at least SOUNDED good and complicated, but I guess not since it seems like it's ignored, too. Chronic fatigue is horrible, though. Obviously, we didn't have Einsten or some advance nuclear physicist thinking up these names, more like Inspector Clouseau. Restless Leg syndrome, that's another doozie. People who have fecal incontinence are lucky they didn't get labeled with "Poopie In Your Pants Syndrome".

    I've found if you pick a body part and say it's malfunctioning and causing problems, then people can only say "oh, that's too bad" rather than "gee, you need to exercise!" or "have you tried those antibiotic depressant thingies?" or "wow, you have that yuppie flu thing!" Pick one: liver, nervous system, hypothalamus or immune system. That pretty much covers all of us and it will end the dumb questions.

    Of course, this only works on "new" people we haven't told yet. It's embarrassing to tell new people you meet for the first time you have "The Tired Thing" or the "Yuppie Flu", it doesn't matter what you say, that's probably what they're thinking.

    And lin21, when someone like SIL says "that's depression, get over it", you can say "and that's ignorance, YOU get over it".

  5. mejlee

    mejlee New Member

    I just want to say... Yes, It is so much fun sitting home everyday (or lying face down in my bed) by myself... No one to talk to... and no money to go do something (if I had the energy) because my SSDI barely covers rent. So yes, I'm on SSDI because it is so much fun and I'm getting rich off of it!

    Medicare says they won't pay for the walker with the seat, but they'll pay for the standard one. Well I can grab a cart at the store but I can't fit in the child seat!

    They will only pay for the meds they feel are appropriate. Even though I can barely keep down applesauce... I'm sure that generic brand won't tear my stomach up!

    I love being verbally attacked by older ladies in parking lots because they don't believe the Disability Parking Permit is mine. I was raised to respect my elders, how am I supposed to talk back!

    And I have not only heard LAZY but how about the "Low pain tolerance?" I won't tell stories because I'm sure there are some here that get quezie, but trust me, I do not have lpt.

    By the way if you take the drugs you are an addict, if you don't you are refusing treatment. You can't win either way.

    But the names are the worst. As soon as you say FM/CFS the Drs. say, "I can't help you." People with FM/CFS don't respond to PT. (And in the same breath they say neither condition exhists!) So since I can't charge you for any extra services... See Ya!

    I hope you enjoyed my sarcasm! We all have to laugh or we would be crazy.