Stigma to Success – My experience with Electroconvulsive Therapy

In 2016, this artwork was displayed at an art show. During the showing, someone came up and asked what this piece was about. Typically, I didn’t stay at shows because I dreaded answering questions about my mental health. My art was my therapy, so while it was an open book, I was not. In the past when asked questions, I would panic, followed by an anxiety attack and a quick exit, but I found the calm, the courage and spoke up.

“In 2015, I was in the hospital suffering from severe bipolar depression and received ECT. I drew this after one of the sessions”

“What is ECT” they asked

I replied in an easy way “shock therapy”.

They looked at my art, then at back to me.

“Really? I would have never guessed you had shock therapy.”

At first, I was happy, smiled and said “thank you” because all I was thinking is “well that’s good, they don’t think I look crazy”. But as I left them and the show, I felt deflated, I was my own stigma and I was perpetuating stigma by not speaking up. I was better, healing more and more each day, so why the shame?

I kept reeling over in my mind what does it look like?

To my knowledge, I had never met anyone healed from ECT, so during that art gallery conversation, I thought, great I don’t look like Jack Nicklinson in one flew over the cuckoo nest.

Before my breakdown, I avoided the topic of mental illness in the person and left it to my creating, but five plus years of in-patient to out-patient had taught me a life-changing lesson; when it comes to mental illness, secrets are damaging, even deadly.

After that night at the gallery, I decided I needed to bring a voice to this treatment and to my journey to wellness. I began to write about my experiences and thought, “if I can’t yet speak my whole truth, I’ll write it and that’s a step forward”.

My journey to ECT began many years before the treatment when I formed into Charlton hospital psychiatric unit. My breakdown happened November 15th 2009 after a day of work and cooking dinner. I was frail, mascara dripping down my gaunt face into my red lipstick. I had no want to continue living and the facade I wore for most of my life no longer existed.

I was released after seventeen days, stable but still chronically depressed so from there I was referred to west 5th for more extensive treatment.

In 2010, I saw my first Doctor and nurse at the west 5th campus. But Even with all the efforts and care from staff, I cycled from in-patient to out-patient, different doctors, different treatments, all the while trying to keep my hope alive.

In 2015, after years of struggles, the in-patient doctor suggested ECT. I thought “well this is the end me; they can’t do anymore so they are shocking my brain”.

This illness I felt had taken everything, I felt broken, a shell of what I once was, so what was the worst that could happen? Five plus years of other treatments had failed and my hope of recovering was looking non-existent.

My Doctor explained the benefits and asked me to watch a Ted Talk by the renowned surgeon and writer Sherwin Nuland who underwent the treatment to get his life back. I watched the talk, mulled over the facts and with this new knowledge, I agreed to the treatment.

In my hospital room, I closed my eyes thinking of the ECT I would receive the next morning but all I could think of was the Hollywood portrayals of the treatment and panicked. I stayed quiet because who was going to calm my fears? Who in the hospital had this treatment to tell me it would be okay? I needed someone who lived through this to say “I made it through, so can you”. The nurses and doctors were amazing, but seeing is believing and I had ever met a healed ECT patient.

I had sixteen bilateral sessions and each one was as difficult as the last. Every session I would look over to my husband and say,

“I’m not going to make it this time”

I did make it but it wasn’t an easy road. The stigma of the unknown, lack of information to both my family and I had made us all afraid. We looked to the internet for answers which added to our fears. If you look up ECT you will find a mix that is both clinical and frightening.

The fear with a mix of sadness was evident in my family’s faces after sessions. At times I drooled over breakfast and could hardly open my eyes because of the headaches. Or when I told the same story, I saw the panicked smiles and knew I had repeated myself. They had no idea if I would return, I had no idea.

After a few treatments, I noticed my memory loss was more than I thought would happen. I debated giving up on the treatments but I chose to keep going. I had way more to lose that part of my memory. This was now a matter of life or death.

I decided I needed to make a plan, so I began to write in my journals before treatments. I needed to see if I was improving in my own words. I couldn’t and I didn’t want to rely on the words of others that I was getting better.

After my eighth session, I wrote,

“Today I feel a shift in mood and I hope the bad thoughts continue to dissipate from me”

And another entry after session twelve

“for the first time in years, I feel truly hopeful.”

In 2015, after sixteen sessions of ECT, my cycle of bipolar depression finally lifted.

Unfortunately, when I got home, I was straining to remember events I didn’t write. I felt like I missing pieces, pieces others held and my anger arose. I knew to continue the journey wellness I had to let go, and accept that some memories that would never return.

Instead, I tried to think of my memory loss in another way; how much did I lose not having this treatment? For five plus years I cycled in and out of the hospital, sometimes up to five months at a time. I lost memories by not being present with my family and the outside world.

Five plus years I heard about events, celebrations I missed out on. Art shows where my art showed up but I couldn’t and years of my family struggling for me to come out of the darkness. Determined with all that in mind I began building new memories, which I continue to do so today.

I recently had an art show with this piece displayed again. When asked what it was about, I repeated what I said at the 2016 art show, adding ECT is a different name for shock therapy.

Again, this person replied like the last

“You don’t look like someone who had that done”

I replied

“Don’t believe everything you see in the movies “and smiled

After, we had a conversation about my journey, the stigma surrounding this treatment. To my surprise, they opened up about their struggles as well. On my way home, I felt a new sense of purpose; I needed to do more for stigma and mental health.

So, this year I became a mental health Peer Support Worker and public speaker. I feel I have a responsibility to speak up about the stigma of ECT and mental health for other struggling as I did.

When asked, I will be honest and I say.

ECT was difficult, it caused frustration, confusion, and anger at times towards myself and others. But I want people to know the most important part about ECT….

After five plus years of unsuccessful treatments, fearing my life was on borrowed time, ECT lifted my suicidal depression and put me on a path of wellness.

Today I live each day purposefully, sharing my story, my trials, and tribulations because I know one person can make a difference. I will continue to tell my truth so others can find the hope, the joy and the sheer determination I found.

 

 

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2 thoughts on “Stigma to Success – My experience with Electroconvulsive Therapy

  1. I am so happy that you’ve found your hope and happiness again. And I’m so proud to know someone who is brave enough to talk about our illness. ECT definitely has a stigma that few of us can dispute because it is so seldom discussed. Since this treatment isn’t performed like in the movies, how is the treatment given? I wish you and your family every happiness that life has to offer. Xoxo

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  2. Thank you so very much Julia !
    When undergoing ECT I was put under so I only witness rolling into the room and out .They still induce a seizure but since you are put under you don’t move around or feel it .There are after effect I mentioned like headaches and memory loss but I would take those over depression any day! My Husband was in the room during the treatments ,would love to hear his side !
    I am wishing you so much happiness as well my brave friend xoxoxo

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