Sunday, July 11, 2010

ECT I: Making the Decision

One thing I have really wanted to post about is my experiences, both positive and negative, with the electroconvulsive therapy treatments (ECT) I received in December and January. I want to write about my experiences with ECT, but I do not want what I write to negatively impact someone else's decision to consider ECT if they are in need of help.

If you are trying to make the decision to have, or not have ECT, please know that my story is just one of many. On top of that, despite some of my negative experiences, I would do it again, because something about the ECT helped me on some level. (I will try to explain that later in another post)

As a person who has had to make the decision, my advice about deciding on whether to have ECT or not, would be to approach a medical professional, a psychiatrist if possible, who you trust and ask them to help you wade through the information and make an informed choice.

For me, choosing to have ECT was one of the most difficult decisions I ever had to make. It is my brain, and even though I hate my depression and anxiety, it's the only brain I have...and if I was to feel better I wanted to know it would be intact after the treatments.

My choice was made even more difficult by how little information I could find that felt like a trustworthy and balanced perspective about the treatments, and potential gains or losses, and/or side effects.

At the hospital, all the information I was given felt like propaganda. The benefits were highlighted over and over again, but the potential side effects were glossed over, diminished, and when I asked about them, pretty much dismissed. Even after I had the treatments, I felt like my side effects were constantly dismissed.

(Note: My own pdoc expressed that I was having the side effect difficulties I was expressing to the other Drs) It was incredibly important that I knew he could see what was happening, because I already felt like I was losing my mind. I did not need the psychiatrists insinuating that I was imagining my ECT side effects. I found the dismissal of my experiences intensely frustrating.

Before I had ECT I met with the Psychiatrist who was to oversee/perform my treatments. We talked. I asked her about potential side effects, commenting that I had read several accounts of ECT and many people had stated they had longterm, and sometimes severe memory problems. The Dr looked at me and suggested that(paraphrase "...the information I read was biased...look at who is writing these articles".

Inside my head I thought...but I am one of those people; a person with a mental illness. I recognize that our psychiatric illnesses can sometimes interfere with our perception of reality, but I am pretty certain my opinions and experiences cannot all be tossed aside as though they were the rantings of a lunatic.

I do have some valid opinions of my experiences, and I do believe I am capable of writing a opinion piece that tells my truth about an experience. I also understand that my truth is not always generalizable to other people. Likewise other people's experiences are not always generalizable to me. The fact remains though, just because someone is ill, does not mean they have no important information to share.

To tell you the truth, a big part of me distrusts pharmaceutical companies, and research organizations, more than I distrust the accounts of people who have actually been through the experiences. There is so little really known about the human brain, so much money involved in drug and treatment research, and so many reasons for an organization to find a positive outcome, that I am not sure how unbiased any medication or treatment research is.

I am not saying I would blindly follow medical advice from someone writing on the internet, but I do read what others have to say, and I would take that information to a medical doctor I trusted and ask them to help me make an informed decision.

In the end, with regards to my ECT treatments I found as much out as I could about the procedure and then I asked my psychiatrist, Dr. X, to share his opinion and information about ECT. I trust him completely. With his help, I made the best decision I could, based on the information available at the time.

Honestly, even though I had, and continue to have, some difficulties due to my ECT treatments, I would have ECT again. I was going to kill myself when I went in for the treaments. I have never been that close to acting on my thoughts. I think the ECT lifted my mood enough for me to work my way out of that hell and into some state of purgatory. So yes, I would do it again.