Wednesday, April 29, 2009

When Our Doctors Disappoint Us

Although I had promised Kelly who wrote a comment on an earlier post about friendship that I would explore that subject further today, it will have to wait until tomorrow. The problem is that after reading Gianna's post, Another Doc Bites the Dust, I've felt so sad that I need to write about my feelings in order to let go of them.

While I hope this doesn't sound like I'm cynical, because I truly am not, if there's anything I've learned from bipolarity, it's that I can't trust my psychiatrists and other so-called healers. During the very sickest period of my life--which was unequivocally caused by toxic medications--I was stunned by the breadth and depth of their deceit and lack of willingness to assume responsibility for the condition they had wrought!

As I have mentioned before, pre-diagnosis, which was a period of 25 years after my first depressive episode, I suffered two semiannual six-week depressive episodes. Once I began taking medication, I went from feeling depressed a total of 85 days a year to feeling so physically ill and emotionally shattered for 365 days a year that I barely survived my first year-long depression.

When I think back, I am speechless at the thought of such a quick and dramatic downhill slide. I can't imagine why I didn't stop taking the medication from the get-go. But, I strongly remember (and I have copious notes confirming this) my psychiatrist saying over and over, "If you're bipolar, you need to be on medication for the rest of your life. And your decline is caused by so many years of untreated depressions."

Of course, in retrospect what Dr. R said doesn't make sense at all. If, previous to taking medication, I was well for 280 days a year--and once I went on mood stabilizers I was ill 365 days a year--then any sane person would conclude it was the medication, not the illness.

Yet, after taking medication for only a few months, I felt worse when I tried to stop taking it. And my psychiatrist kept on blaming my untreated depressions rather than the medication for my condition. Because the Internet was in its infancy, it was difficult to get information about other people's experiences. And, I could find no books that provided any success stories of people who had successfully gone off drugs.

And the worse I felt, the more drugs my psychiatrists gave me. Over a ten-year period, four psychiatrists prescribed 25 different medications in different combinations and dosages, including: Abilify, Adderall, Ativan, Buspar, Celexa, Concerta, Cymbalta, Depakote, Effexor, Geodon, Klonopin, Lamictal, Lexapro, Lithium, Neurontin, Parnate, Prozac, Seroquel, Strattera, Tegretol, Topamax, Trileptal, Wellbutrin, Zoloft, and Zyprexa.

And I experienced the attendant side effects, including anxiety, blurred vision, confusion, cognitive memory loss, diarrhea, dry mouth, hair loss, erratic behavior, exaggerated response to stress, hand tremors, headaches, insomnia, irritability, rapid cycling, a severe rash, shortness of breath, slowed mental functioning, slurred speech, vomiting, weight gain, and so much more.

The medications made the depressions far worse, and produced hypomanic behavior I'd never experienced before. For six years, all I did was cycle from depression to hypomania and back again.

It's difficult to describe the depth of problems all of this caused. But I was so sick so much of the time that death would have seemed like a viable alternative. It seemed as if the medication destroyed everything I love. I had always been a successful person with high self-esteem. And when erratic behavior and cognitive memory issues destroyed my career, I was devastated.

The strain on my husband caused atrial fibrillation, and high blood pressure. We had terrible financial problems due to the loss of my salary, the cost of health insurance, and the fact that so little of my treatment was covered. The length of the illness and its severity destroyed friendships and family relationships.

But, for me, the very worst thing of all was the impact on my son (whom I love more than life itself). I was sick for much of his childhood and my illness affected every aspect of our lives. It's too painful for me to recount, but my inability to forgive my doctors and my rage at the incompetence of the treatment protocol are due to my feelings of loss and grief regarding my son's childhood.

Because I couldn't find the help I needed within psychiatry, I pursued a number of alternative practitioners--some of whom are quite well-known--and the level of their deceit was even worse than my doctors (although there was no residual damage to my system). As I read about these people getting grants from medical centers or going on Oprah and being written about in such positive ways, a part of me badly wants to "name names."

I want to shout out, "The acupuncturist who you are currently funding (ten years after I saw him), promised me that if I came to him for 13 sessions, and bought all the herbs he gave me that I brewed for tea, he could eliminate my depressions. And it was an out and out lie. In my experience--and with all the research I've done--I believe that acupuncture is most effective for musculoskeletal problems. There is no conclusive evidence that it works for depression.

I want to write to Oprah and say, "The holistic psychiatrist who's been on your show is perhaps the worst charlatan I've ever seen. During one of the most painful depressive episodes of my life, she charged me $400 for a consultation and another $157 for vitamins, minerals, and amino acids, and never once looked me in the eye as she was asking me the most stupid questions I'd ever heard. She's totally clueless about depression, and her entire process is a sham."
And there are so many more stories I could share that tears are running down my face as I write this.
So, when I read that Gianna's doctor wanted to give her Cortisol despite the fact that her research suggested it would be harmful for her, and she had repeatedly told him she felt that way, and he kept on insisting she needed it until she raised her voice, and then he hung up on her, I knew exactly how she felt.

Over time, I learned what it's like to be desperately ill, and yet feel abandoned by a wide range of so-called healers. My psychiatrists weren't interested in how painful and long-lasting the depressions had become, or how horrible the medication was. Their answer to everything was to throw more medication at me. The alternative folks were happy to take my money, and provide no relief whatsoever.

After years of struggling, and feeling worse and worse, I finally lost hope. The only reason I was able to survive is because I would never abandon my son. And, slowly I began finding people online like Gianna and so many others who were in the same situation, and I realized that if our doctors couldn't help us, perhaps we could help each other.

While I am now able to control my anger about what happened to me for so many years, it is far more difficult for me to control my sadness. And perhaps that's okay.

If a treatment protocol makes us sicker rather than better, I believe it's important to speak out. If we feel that our psychiatrists are using us as guinea pigs, we must speak out. If we believe that alternative healers are being dishonest, we must say so.

Because if we don't bear witness to what's happened to us, it will happen to others. And truthfully, if I felt my silence would cause someone else to experience the pain and suffering that I have had to withstand, I couldn't live with myself.

(As a follow-up, I'd urge you to read Gianna's post today. She mentions it in her comment, but it's something you really don't want to miss.)

7 comments:

Gianna said...

Susan,
I'm sorry this brought up so much pain for you...but I'm glad you were able to write about it...

today I am filled with despair and will probably write a post once I feel a bit better.

I spent a good hour on the phone yesterday with the foremost journalist and author on the topic of psychotropic iatrogenic illness (drug induced illness). I am a subject in his upcoming book.

it was terribly traumatic speaking with him..he is a very, profoundly kind man...he is also honest and I called him to ask what his opinion is...

I'm so sick, so crippled, I'm getting an MRI set up to rule out MS, but he said he sees this again and again with people who have been on drugs at the amounts I was on...as you know I was on a massive cocktail of multiple drugs...

anyway...he DOES NOT see terribly encouraging results from cases such as my own, though we both know of a few separate cases of people who have my prolonged history of massive drugging who are at least somewhat recovered...

in any case he was honest with me and said he simply could not be sure I will recover.

and so I lay in bed most days all day long with a laptop in my lap hoping I can reach younger people before they cross that line for which it may be too late, as it may be for me.

anyway...I will find a way to get through the mourning process of the loss of my physical well-being and find meaning in my life.

a few weeks ago a mother who had asked me how to help her young 13 year old son asked me my opinion...I gave her a list of things to research and do and a diet to follow...

six months later the boy was off all drugs and doing well with NONE of the behavior problems that had labeled him bipolar.

if I can do that just once a month. Save one soul from my future...then my life will have been worth it.

that doesn't mean I don't mourn the loss of my autonomy and the inability to walk, drive, and do normal things.

Gianna said...

I wrote a post in response to this one...based on the comment I left...but I go into much greater detail...just in case any of your readers are interested...follow my name and go to my blog...

Wellness Writer said...

Dear Gianna,
As you know, I am so terribly sorry and sad that you continue to be so debilitated. On a personal level my heart goes out to you.

As a fellow human guinea pig who took psychiatric medication that was prescribed by some of the "best and brightest" bipolar psychiatrists in Los Angeles, I can feel my rage bubbling up again.

I am grateful for the work you do, and hopeful that perhaps once this journalist's book is published, this issue will come to the forefront.

I wonder how many of us have to suffer--and die--before there are congressional hearings into the treatment protocols for bipolar disorder.

Susan

Mariposa said...

I have to go to Gianna's site too...maybe later today. This pissed me off! If people are not sensitive enough to feel their patients, for what do they call themselves doctors for?!

Doctors do this and that and sometimes out of desperation we just let them (remember that post about the Derma I saw?!). But now we know better, thanks to internet as well!

I am lucky to have options on people who will prescribe me meds...and to tell you the truth, I have to see several people to check and discuss the meds! It sucks then as I was still tying to understand what's wrong with me and I have to exert extra effort on top of that to watch myself not being abused by drugs which I do not need and will not work for me!

Sad to say this practice happens and is happening not just in our world but in the entire health industry as well.

I have read a book entitled Mocking Years...about a life of a woman in and out of therapy...and reading this post reminds me of that book.

Just sad.

Wellness Writer said...

Dear Mariposa,
Thanks for commenting on this post. I do remember about the dermatologist you saw, and I would agree that all of it sucks!

My cousins are visiting today, so I have to go offline. But, this topic is one that I'm passionate about.

Susan

alcoholselfhelpnews said...

Hi,

I so agree with you. I'm sick of the establishment medical system and their narcissism.

I recently found this site

http://www.village-isa.org

An alternative and 'Wellness' focused village of recovery.

I particularly liked the 'Comparison of two models serving adults with psychiatric disabilities' document.

Wellness Writer said...

Thanks for your comment and for the link. I'll check it out.