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

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In this post, I talk about the grief people disabled by ECT experience, which often goes unrecognized. 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).

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grammar edits 1/19/24

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 disabled by ECT, this grief is rarely seen as real or valid in our society. 

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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, the suicide of a loved one, loss of faith, infertility, past abandonment, or having a stigmatized illness like AIDS, chronic fatigue syndrome, etc.

Common losses we grieve

Many disabled by ECT face countless losses and challenges after treatment. These may include:

  • Lost relationships with their loved ones, friends, or colleagues
  • Major changes to 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
  • Emotional numbness
  • Changes in their health and physical abilities that limit independence
  • Betrayal trauma from being misled and abandoned by their doctors

Ways our grief is stifled

The following are common responses to our experiences from our doctors, family, and society.

Doctors

Doctors often brush off reports of brain damage resulting from ECT, saying things like, “you seem fine” or “ECT doesn’t cause the problems you describe.” This invalidates the person’s experiences 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 condition. Depression can be difficult to understand for those who haven’t gone through it, let alone depression and brain damage.

Any existing misunderstandings and resentments before ECT may be magnified, resulting in doubts about the authenticity of one’s losses 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 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. Some families are distrustful of the mental health system.

They may, understandably, be worried about ECT side effects. They may try to discourage their loved ones from ECT or may distance themselves from them while they undergo treatment. If they become disabled from ECT, the unsupportive family member may blame them for having it. In response to them becoming disabled by the treatment, they may say things like, “What did you expect?” or “You chose this.”

Society

The public’s perception of mental health has changed a lot since I was misdiagnosed with bipolar in the 90s. Now, there is more emphasis on 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 attitude change is generally positive, it often happens without people fully understanding the ambiguity of diagnosis, lesser-known risks of psychiatric interventions, and the corruption and abuses within the mental healthcare industry. Often, those who try to raise awareness are silenced by pro-treatment dogma.

Society responds to those harmed by ECT with various dismissive and invalidating reactions and attitudes.

In response to someone sharing the struggles after ECT, some may counter by sharing 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 that they are stigmatizing those who benefit from ECT. Some might dismiss negative ECT outcomes by comparing them to other medical procedures with risks. But it’s important to know that most doctors take care of patients having issues with other medical procedures, while people hurt by ECT often struggle to get the right care for known side effects.

People injured by ECT may also receive personal attacks for sharing their experiences publicly. We frequently get accused of being anti-science, Scientologists and anti-vaxers.

You are not alone

If you are struggling with grief over your losses after ECT, 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 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 like me. Then, in 2015 I found a Facebook support group for people harmed by ECT. For so long, I felt invisible. Meeting so many people with the same 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, share advice, and 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, it 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

Disenfranchised Grief 

Acquired Disability Grief 

Validation

Tip #3 Get testing

Getting correct testing can be a struggle, but it can be worth the effort; 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.

Peers have reported similar success using this reason. It seems 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 unwilling 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

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. Neurooptometrists don’t seem to be influenced by ECT politics like other medical and mental health specialists are. Diagnosing and treating visual problems can help with recovery in many ways.

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 my ability to improve in school and rehab.

Learn about vision assessments for ECT injury.

Final thoughts

After being disabled by ECT, many of us feel grief. This loss can be unimaginably painful and can feel like it will never end.

Taking small steps, like finding social support and learning more about your condition, can help you on your road to recovery.

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Anna

Anna is a childhood psychiatric drug and a teenage electroshock survivor. She founded Life After ECT to ensure people injured by electroconvulsive therapy have easy access to resources that can help them understand their injuries and find a path to recovery.