In this post, I want to talk about the grief that people who ECT has disabled may experience, which often goes unrecognized or acknowledged by others. I want to clarify that I am not a mental health professional but someone who has gone through this experience, sharing what has helped my ongoing recovery. (see full disclaimer) Whether you have experienced this type of grief or know someone who has, this blog post offers information and tips for coping with it and the many challenges of being disabled by ECT.

grammar edits 8/10/23

Disenfranchised grief: the unseen pain of those disabled by electroconvulsive therapy

Many suffer disabling side effects from electroconvulsive therapy (ECT) they weren’t warned of. Suddenly becoming disabled is naturally a source of grief for many. For those injured by ECT, this grief is rarely seen as real or validated in our society.

AI generated oil painting in greys, blacks and white and light blue hilights of a woman sitting with her head up eyes closed with an anguished expression on her face

Disenfranchised grief

Each society has rules for what circumstances are acceptable to grieve and who is worthy of compassion for these losses.

Disenfranchised grief encompasses individuals’ profound emotional pain and loss, which goes unacknowledged or supported by society.

Disenfranchised grief examples can include circumstances like the death of a pet, suicide, loss of faith, infertility, past abandonment, or having a stigmatized illness like AIDS, chronic fatigue syndrome, etc.

Common losses those disabled by ECT grieve

Many disabled by ECT face countless losses and challenges after treatment. Some of the common losses we grieve include:

Lost or broken relationships with their loved ones, friends, or colleagues
Changed personality or identity
Lost memories of important events like the birth of a child, a wedding, or the memories of a loved one who has passed away
Loss of a career or education
Lost skills and talents
Inability to feel emotions or pleasure
Changes in their health and physical abilities that affect their daily functioning
Betrayal trauma from being misled and abandoned by their doctors about the risks of ECT

Ways our grief is stifled

The following are examples of common responses to reports of brain damage to our doctors, family, and society.

Doctors

Doctors may dismiss reports of brain damage resulting from ECT, saying, “you seem fine” or “ECT doesn’t cause the problems you describe.” This invalidates the individual’s experiences and emotions and makes it harder for them to get the help they need to recover.

Family

Most families are unprepared for a member to become disabled, let alone from a procedure with life-altering side effects that few healthcare providers will acknowledge or treat.

Before receiving ECT, the relationship between the recipient and their family may have already been strained due to the severity of the individual’s depression. Depression can be difficult to understand for those who haven’t gone through it, let alone depression and brain damage.

Any misunderstandings and resentments that might have been present before ECT may be magnified, resulting in doubts about the authenticity of their loved one’s disabilities and can lead to a lack of support in addressing them.

Families may defer to medical authority and adopt the same dismissive statements used by medical professionals and the media. Unfortunately, in some cases, families are sometimes manipulated into helping doctors force shock treatment upon their loved ones through coercion or involuntary commitment.

Another way this can play out is when family members have an oversimplistic view that happiness is a choice and their loved one needs to change their attitude. Or they may doubt their depressed person’s experiences or be skeptical or distrustful of the mental health care they receive.

They may, understandably, be worried about ECT side effects. They may discourage their loved one from treatment or may distance themselves from their depressed loved one. If they become disabled by the treatment, they may be blamed for choosing ECT, saying things like, “What did you expect?” or “You chose this.”

Society

The general public’s perception of mental health has changed significantly since I was misdiagnosed bipolar in the 90s, emphasizing seeking treatment and support for people with mental illness instead of the “shame and shun” attitudes I grew up with while undergoing psychiatric treatment as a child.

While this shift is generally positive, it often occurs without fully understanding the nuances of diagnosis, the potential risks of psychiatric interventions, and the corruption and abuses within the mental healthcare industry, leaving many traumatized and disabled and silenced by pro-treatment dogma.

This zeal for being “pro-mental health” coupled with a lack of awareness can lead to many consequences for those harmed by psychiatric drugs and treatments like ECT. Society often responds to those harmed by ECT with a variety of dismissive and invalidating reactions and attitudes.

In response to someone sharing the struggles after ECT, some may cite articles or personal anecdotes about ECT saving lives, possibly a friend, a loved one, or even themselves.

Others may attack those disabled by ECT, accusing them of lying or delusional thinking. They may be told to stop stigmatizing those who benefit from ECT. Some people might disregard the negative consequences of electroconvulsive therapy (ECT) by comparing it to other medical procedures that also have risks. However, it’s important to note that most doctors provide appropriate follow-up care for patients who experience issues with other medical procedures. On the other hand, patients who undergo ECT often struggle to get correct aftercare for known side effects.

Injured ECT recipients may also be attacked for sharing their experience publicly, called anti-science, or compared to groups like Scientologists or anti-vaxers.

You are not alone

If ECT has disabled you and you are struggling with grief over your losses, it’s important to know you are not alone. Your pain is real, and your feelings matter.

The following strategies have helped me deal with my grief and move forward with my life after being disabled by ECT. This list isn’t exhaustive, but I hope it can give you a good starting point for your recovery.

Tip #1 Find social support

I had been disabled for over eight years before I met others similarly harmed by ECT. Then, in 2015 I found a Facebook support group for people injured by the treatment. For so long, I felt invisible. Meeting so many people with the same symptoms and struggles was life-changing. It was a relief to know it wasn’t just me, that I didn’t imagine my symptoms.

Relating to peers can help you feel seen and heard. Support groups can be a great place to compare experiences and, share advice, give and receive social support; This can help you process grief and find ways to move forward with your life. If you have trouble finding an ECT support group, please contact me.

If you don’t feel comfortable joining a support group, an alternative is to read about similar experiences. The following is a collection of experiences with ECT:

Tip #2 Find resources

When ECT disabled me, it felt like no one understood what I was going through. It was frustrating and isolating. Explaining my condition to myself, let alone others was impossible without the right words. So for years, I struggled to understand what had happened to me and how to communicate it.

My doctors didn’t believe me. Everywhere I looked online said ECT was safe and effective and didn’t cause brain damage. Then, one day I stumbled across a 1991 report by Linda Andre to the National Head Injury Foundation.

Linda’s work showed me my symptoms were real, I wasn’t alone, and there were ways to live a better life after ECT, even if doctors wouldn’t help me.

Over time researching brain damage and ECT has helped me find the words to describe my experience and cope with my grief. This has also allowed me to accept my limitations and find ways to adapt to and sometimes even enjoy my new life.

Getting started

There are lots of resources out there that can help you with this process. You can read blogs or books written by people with similar experiences with ECT or head injuries. You can also listen to podcasts or audiobooks if reading is difficult.

Here are some topics you can search for:

Online brain injury support groups like this one.
Alternatively, you can search for in-person support groups near you.
Grief after brain damage or becoming disabled.
Specific brain injury symptoms.
Support groups for other conditions you may have from ECT (see side effects list).

Traumatic brain injury resources examples

Headway – the brain injury association – Headway is an organization with brain injury resources, tips, and more.
What You Need to Know About Brain Injury Brainline is another good resource website.
The TBI Therapist Podcast: What no one tells you after brain injury (part 1 of 3)

Disenfranchised Grief

Acquired Disability Grief

Validation

The Power of Validation: Arming Your Child Against Bullying, Peer Pressure, Addiction, Self-Harm, and Out-of-Control Emotions – through child-focused, the information in this book is a good primer on what validation is, why we need it, and models how you how to validate yourself and others.

Tip #3 Get testing

Getting correct testing can be a struggle, but it can be worth the effort because it can provide closure and help you access support, accommodations, disability pensions, and sometimes rehabilitation. Moreover, understanding your losses can help you cope with your limitations more effectively.

Here’s a helpful tip: I spent five years trying to convince my doctors ECT damaged my brain. They refused to take me seriously. They only agreed to refer me for testing when I mentioned wanting to return to school.

Other peers have reported similar success using this reason. It seems that doctors are more willing to write referrals for those who want to improve their education or job skills.

What to expect:

So far, no psychologists I’ve worked with have been willing to attribute my deficits to ECT. However, the results were still validating and helped me access services and accommodations.

Learn what tests to request.

Vision testing

Doctors are beginning to uncover how ECT affects vision. There is a branch of medicine focused on finding visual problems through these tests that can help with recovery. Neuro optometry is a branch of optometry that deals with the visual system and its connection to the brain.

Neuro optometrists diagnose and treat vision problems caused by brain injuries, diseases, or disorders. They use various techniques and tools to assess and improve their patient’s visual function and performance.

In my case, Neuro optometry gave me the first diagnosis recognizing ECT as a cause of my visual processing disabilities. Neurological optometrists don’t seem to be influenced by ECT politics like psychologists and mental health professionals. Finding visual problems through these tests can help with recovery.

Looking back, I would have prioritized vision therapy over speech and occupational therapies. Vision therapy would have been more helpful by improving weaknesses that limited how much I could improve in school and with other therapies.

Learn about vision assessments for ECT injury.

Final thoughts

Many of us experience disenfranchised grief after being disabled by ECT. Being isolated in this loss can be unimaginably painful and can feel never-ending.

Finding social support and learning about your condition through research and testing (when possible) are steps you can take that can help you work around your disabilities and improve your quality of life after ECT.

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Disenfranchised Grief: the unseen pain of those disabled by electroconvulsive therapy (ECT)

Disenfranchised grief: the unseen pain of those disabled by electroconvulsive therapy

Disenfranchised grief

Common losses those disabled by ECT grieve