Misdiagnosis - Readers Tell Their Stories

John McManamy Health Guide
  • When it comes to your illness, you (patients and loved ones) are by far the the best experts. You have no further to look for proof than to the comments that began with a recent question of the week, Diagnosis and Misdiagnosis, followed up with another Question of the Week, How Long Did it Take?, and elaborated on in two shareposts based on some of those comments, Eight People Tell Their Stories, and Misdiagnosis - The Dialogue Continues.

    No sense in stopping now ...

    Tabby writes:

    "I knew, at age 8 that something was not quite right. I was sad, quiet, alone in my head, scared of everything, and cried a lot." At age 10, she asked for help from a school counselor and went to a child psychiatrist at age 12, and received counseling, off and on, till age 40, when she was finally diagnosed with bipolar II (mixed), which was upgraded six months later to bipolar I. She is now 43.

    Add This Infographic to Your Website or Blog With This Code:

    "Now, I'm going to cry." she concludes, "cause I'm reminded I've been at this battle for 35 years. Thirty-five very long and often painful and exhaustive years."

    In a similar vein, Nonethewiser begins:

    "I always knew I was different. ... I always kept to myself in grade school, all the way to graduation.  I just didn't fit in, and no one wanted to be seen hanging around with the weird girl. I must have lived in my bedroom my whole life."

    Her mom kept telling her she was sick and needed to see a doctor, but then did not take her to one. This was the 1960s, after all. What could they do? It took her till 1995 to find out she had bipolar.

    "I can't tell you how many times in the past I put my fists through windows," she writes, "cut myself, attempted suicide, pulled my hair out by the roots (it's a wonder I have thick hair still).  It's amazing that it took until the mid 90's for doctors to listen to me...really LISTEN.  It was like I was an inconvenience to everyone all my life."

    But once she and her husband had something to work with, "this is when my life started for the better."

    As for Elizabeth:

    "Years ago, I suspected I was bipolar. I had very severe, depressive experiences. However, there were many times when I was ecstatic."

    She went to doctors and told them she thought she was bipolar, but their typical response was, "no your not, you're too up for that." She notes the reality was far different when she wasn't around people. She concludes:

    It was only when I got old and ugly that a doctor finally said, ya man, she's depressed, and she's bipolar. ... When I was young, beautiful and well-groomed, I looked like a female high-powered  executive. On top of the world to the doctors who saw me.  They dismissed my claims of depression, as ridiculousness. What does she have to be depressed about? Now that I'm old, ugly, unfashionable, I'm believable.  She sure does have a lot to be depressed about.

    Funny isn't it.  Actually, No.I could have been getting help all those years, instead of raving like a maniac because I needed help.  Don't judge a book by its cover doctors.  All that glistens is not well.

  • Why does it take so long for doctors to get smart? Phoenix responds: "I believe it was because I was diagnosed with [depression] before so instead of trying to find out what I needed, the docs took the previous diagnosis and just agreed with it."

    Add This Infographic to Your Website or Blog With This Code:

    It took 25 years before a doctor finally corrected the original error.

    And EliminateStigma had this to offer: "The doctor (as many are) was a know-it-all and rarely listened to me. The doctor rarely considered how I felt. The doctor thought no one could ever know more than this one. The doctor rarely even considered the possibility of what I was feeling."

    Her doctor only wised up three years later after she began bouncing off walls on an antidepressant. She is still struggling.

    Doctors who don't listen - that has been by far the number one complaint I have received from readers ever since I began writing about bipolar more than 10 years ago. Reports Phoenix:

    "After 20 years of incompetent, uncaring doctors with god complexes who refused my opinions because I was not a doctor, I started losing my mind, literally."


    Finally, she went to the same doctor who diagnosed her son with bipolar: "He was shocked that I had seen so many doctors and not been diagnosed with it before. He tried two medications on me and when those didn't work, he said he didn't know what else to do. So Here I am, 48 years old, still unmedicated, still manic, without a doctor and no hope that I will ever get any."

    Is there a good doctor in the house?

    Mejeba was referred to a psychiatrist "who knew what to look for. "He recognized that my hypomanias are dysphoric for the most part - agitated and irritable, with anxious racing confused thoughts that are depressive as well. I applaud him for not having the DSM IV glued to his face and thinking that hypomania has to be euphoric."

    Thus it only took six months between going to the GP with unbearable depression and being diagnosed with bipolar II and onto mood stabilizers. Nevertheless, her case is complicated and she has overlapping illnesses to contend with, so after four years of treatment, "It's hard for me to be objective enough to say that I'm better." But at least: "I feel that I'm in good hands."

    Alas, how to find a good psychiatrist the first time? But that is a topic for a future sharepost ...

Published On: October 30, 2009