Misdiagnosis

Like hoards of other people this week, I shared the blog post “I am Adam Lanza’s Mother” on my facebook page.  The author of the piece describes her struggle in raising her son, who suffers from mental illness.   I’m sure you have read the post by now, so I will leave my summary at that.

I read a criticism of this piece.  The author stated that the original post served to stigmatize people suffering from mental illness as violent and out of control.  I did not agree with the post in its’ entirety, but I had to admit that the words “mental illness” do have a stigma surrounding them.  I have faced this stigma on a small scale in my own life.

One of the few positive initiatives that can be born from this tragedy is opening up a conversation about mental health.  For that reason, I thought I would share my story.

I was misdiagnosed with bipolar disorder sometime in my mid twenties.  If you’ve read my early blog posts, you know I entered into a unhealthy relationship when I was a senior in high school and stayed with that person for eight years.  Toward the last few years of our relationship, we both knew we were unhappy.  We had come to an impasse- I did not want to remain in a polyamorous lifestyle.  My partner did.  Rather than face that reality head on, my partner convinced me that I had bipolar disorder.   In an effort to appease him, I made an appointment with a therapist.

A therapeutic relationship is based on trust.  Patients reveal their most hidden and problematic feelings in hopes that the therapist can offer a fresh perspective that provides relief.  If the patient does not trust the therapist, the partnership cannot work.

I did not trust my therapist.  Upon my telling him about my polyamorous relationship, he immediately took a tone of judgment, even scoffing and shaking his head.  He started talking to me about Christianity and how my then lifestyle went against God’s plan.  He had me respond to a list a questions, and based on my responses, he diagnosed me as having bipolar disorder- a process that took less than five minutes.  He was a therapist, not a doctor, so he wrote me a note with his diagnosis and advised me to go to my doctor and ask for antidepressants.

At the appointment with my family physician, I was prescribed Prozac.  My doctor did not question the diagnosis at all.  And why should she?  I’m sure she believed the therapist did a thorough job in assessing my symptoms.  She referred me to a psychiatrist for follow up with my medication.

I saw the same psychiatrist for a number of years.  I have mixed feelings about him.  In our final few sessions, I questioned if the bipolar diagnosis had been correct.  By this time, I had left my dysfunctional relationship, found a good therapist, and started on a journey to a healthier life.  Once I was out of the toxic situation, most of symptoms and negative behaviors subsided.  In the past, I had bounced from person to person in an effort to find self worth.  I now had the confidence to stand on my own.  I wasn’t having severe mood swings.  I wasn’t missing work based on my emotional well being.  I was taking care of myself. I was in a solid, healthy relationship.

To my surprise, my psychiatrist agreed with me.  He showed me how in his early notes he questioned the bipolar diagnosis, because while I struggled with depression, I never exhibited true manic behavior.  At the time, I was just happy to know he agreed with me, and that he thought I had turned my life around.  Upon reflection, I wondered if I had never brought it up, would he have ever said anything about the misdiagnosis?  Why did he keep prescribing the medications he did?

I have a love hate relationship with medication, or I should say with the ease of getting medication.  I believe it is important to make it accessible.  If it is too difficult to get hold of, many people who could benefit from it will not receive it.  But I think there needs to be detailed discussion between patients and doctors before you put something into your body.  I did not have that.

Over the years, my medications changed.  By the end, I was taking Effexor for depression and Seroquil to assist me in sleeping.  In my opinion, both of these drugs are very strong and routine use should not be entered into lightly.  My doctor made sure to tell me the benefits of the pills, but did not go over the side effects.  I was certainly not advised how difficult it would be to come off of these drugs.  I hesitate to use the words withdrawal, because I don’t want to insult people who have faced true drug addiction.  But when I stopped taking the pills, I felt physically sick.  My skin itched.  I couldn’t sleep.  I was nauseous.  My mood plummeted, as well as my patience.  After a week or so, my condition improved, but it was a very rough week.

I did not take medication for about a seven years, and did not exhibit any behaviors that would label me as bipolar.  Yet, I was still stuck with the label.  Although I had the discussion with my psychiatrist, it never went further than that.  After the birth of my first son, I stopped working.  I was no longer covered on my employer’s insurance plans, and had to transfer to my husband’s.  I was dumbfounded when I was initially denied life insurance because of my past history of bipolar disorder.  I had never been violent, never been hospitalized, never had any issue beyond taking prescribed medication.  Yet the insurance company would not cover me unless I had a form  completed by a doctor.

By this time, I had moved out of state.  Since I had not needed to take medication for years, my new physician had not treated me for any mental illness.  My psychiatrist had since retired.  I explained my scenario and was advised I should return to taking medication daily, for the rest of my life.  I reiterated that I had not taken antidepressants for many years, and I didn’t think I should take medication I don’t need.  The doctor said that in people with chronic depression, the brain can deteriorate if you do not take medication daily.  He then questioned “Can you honestly tell me you’re never going to be depressed again?”

What a stupid question.  Can anybody answer that in the affirmative?  No.  If they can, I would think THAT would be suspect.  I deterred the conversation by explaining that I was breastfeeding, and did not want to take medicine while doing so.

He then said “Basically, they want to know you’re not going to go crazy (he actually made the loopy finger motion around the side of his head) and kill yourself.”

I assured him that was not the case.

He responded by saying “well you don’t know.  You could go home and find your husband in bed with your best friend and just lose it.”

Internally, I wondered if this was a standard line of questioning.  It seemed grossly unprofessional.  But I just sat through it, wondering if I had in fact commented on his offensive demeanor, would that be considered “crazy.”  He finally relented, signed my paperwork, and off I went.  As a side note, I can only get limited life insurance coverage, due to the bipolar diagnosis.

Bipolar disorder did not return to my vocabulary until after the birth of my second child.  I struggled with postpartum depression and felt completely overwhelmed.  I was able to function and care for my children, but was emotionally drained from the ups and downs I faced as the mother of two sons.  Logically, I knew my hormones and stress level were playing a large part, but logic wasn’t helping me get through the day.  I needed some relief.

I had since found a doctor I trusted and formed an ongoing relationship.  I told her my story from the beginning.  She patiently listened and asked for details.  She said she didn’t think I had bipolar disorder, and thought I had periods of periodic depression, in this case, postpartum depression.

We began discussing medication options, and this time, I did not play the role of the silent, passive patient.  From experience, I knew to ask about all aspects of the medication- the good, the bad, and the ugly, if you will.  I didn’t want to end up in a cycle of needing a pill to wake up, a pill to sleep.  While I believe many people benefit from ongoing, extended use of medicine, I do not feel that is what I need.

We agreed to an antidepressant for a year.   She also gave me a limited supply of medication to help me sleep, since I had been struggling to get rest, but with explanation that there would not be refills.

I began seeing a new therapist.  Man, if there is one gift any new mom needs, it’s therapy sessions.  There is nothing more freeing than having an hour to completely unload on someone without worrying if they are going to tell the neighbors, or judge you negatively, or not want to talk to you again.

I am happy to say I responded to the combination of therapy and medication very well, and returned to be my happy, energetic, too ambitious self.

I share this story for three reasons.  One, that improved mental health can be achieved, but only with careful consideration and work from all parties involved- the doctor, the therapist, and the patient.  I am happier and more fulfilled in my life than I ever have been.  That is the mark of success.  Two, I hope others will share their stories.  Most often when faced with a mental health issue, I see people respond with shame, guilt and embarrassment.  There is no shame in having a medical condition.  If I had a kidney condition, I would not feel ashamed of taking medication.  Why should I feel like a failure if my chemicals or hormones are out of balance?  Seeking out help for a problem should be applauded, not ridiculed.  Third, when we talk about mental illness, it sounds like this scary and daunting subject.  We imagine deranged psychos and babbling madmen.  Like any other illness, there are levels.  If a person says “I’m sick,” that can mean “I have a cold” or “I have cancer.”- pretty big difference.

I don’t know what happened in the mind of Adam Lanza.  I don’t know if his horrendous crime was the result of mental illness.  But I do know that opening up the discussion on the topic can’t hurt.

 

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