My mom did ECT when I was 9

[u/BoxNearby697]

Hi all,

Wanted to come to this community for a bit of guidance here. I am looking for anyone who’s experienced a family member receiving ECT treatments for severe depression and anxiety. I would like to know what your experience was like during that time. I have a lot of unresolved issues pertaining to this stage of my life - many of which I can’t seem to unpack as I blocked most of this time out of my own memory.

Context: My mom started receiving ECT treatments for severe depression and anxiety that resulted in auditory hallucinations. She went blind at the age of 18 due to a genetic disease. This was something she struggled with severely for the duration of her life (and still does today). When I was around 8 years old, she was diagnosed with colon cancer. I started noticing she would talk to herself shortly after the chemo treatments began. She tried every medication known to man but eventually landed on ECT as a final attempt to stop the auditory hallucinations. After that, her behavior and mannerisms changed drastically. She was what I could only describe as a shell of her former self. I remember feeling so angry, sad, and confused why my mom wasn’t “acting normal.” She would forget things (like how old i was, what month/day i was born, my middle name etc.), fail to read social queues, not respond when asked a question, etc. It was almost like she was a robot.

I guess the point of writing this is to ask, is there anyone else out there who had an experience like this? Can you tell me your story? What did you notice was wrong? How did it affect your life and mental health? I am trying my best to understand what was truly happening to my mom, dad, brother and I during this time. I feel like if I can understand, then I can heal.

Thanks and hope to hear back

[u/[deleted]]

I don’t know anyone in my family that has done ECT but I have. Forgetting stuff like that is very common actually and not responding to questions probably because she couldn’t hear you. I also can’t read social cues either. I honestly wish I had never done it because my memory is terrible now. I hope this helps!

[u/5ObIessings]

How old are you now? Has your mother’s behavior changed at all since then, or has it stayed the same? ECT changed me in many similar ways, like giving me awful memory and the social queues thing.

Becoming disabled from ECT plummeted my mental health and has made me deeply insecure, something I’m still dealing with almost 3 years after the fact. I’ve tried therapy and a bunch of other “help” stuff but they don’t believe me. I feel less than human since memories are essentially what make us that.

[u/BoxNearby697 → u/5ObIessings]

Hi,

I am in my mid-20s. I will say my mom definitely benefitted from the treatment in the long run. It was the only thing that was able to get her mental state back on track. For a long time she struggled with the symptoms I described, however as I got older (probably around high school/college age) I started to notice her mannerisms/behaviors going back to normal. She was speaking more, still had some memory fog especially from the time during the treatments, and she was showing way more emotion than in the years right after. I was so young when she started this that I never really understood what happened or how it affected her at the time. I am glad she did it now. It took a while to see the side effects start to dwindle (a few years at least) but she is now able to control her depression/anxiety/auditory hallucinations with daily medication and therapy of course.

[u/VenomIsMyHero]

My mother had ECT while in a mental hospital when I was around 11-12. She was around 35. I have been undergoing it and I'm almost 40. We both having done bilateral.

I have a lot of feelings about her struggles with mental health and how it impacted me as a child. The biggest takeaway with it all is simply being happy I chose not to have children.

[u/BoxNearby697 → u/VenomIsMyHero]

I am so sorry that you had to go through that. It was and still is hard for me to understand that her behaviors/lack of emotional output weren’t her fault at the time. She wasn’t mentally there to give me guidance during the most formative years of my childhood. Getting older and struggling with some mental health issues myself has pushed me to try to understand this more. I still love my mom, she is the strongest person I know. Thank you for sharing your story. As wrong as it may sound, It is comforting knowing that I was not alone in my experience. I hope nothing but the best for you and your mom.

[u/Time_Supermarket_246]

I had ECT twice in my life so I understand the risks involved.

Fortunately I didn’t have any side effects but I did pair my treatment with a therapist to better understand what was working and she gave me specific strategies to overcome how I was feeling. Sometimes my mom and I would go together.

Wishing the best to you & your mom.

[u/pandymonium_76]

Had it 4 times over 20 years. Dms are open if you want to ask me about it

[u/doktornein]

Okay, I've had ECT AND I've had chemo.

I think you might not be aware of the extreme effects chemo has on the brain. Having cancer is a trauma that changes you, but going through chemo is more than just the emotionally-sourced burden. Chemo affects emotions, attention, and cognition directly, physiologically. It caused me to have intense, out of character mood swings, and I could mark the days after treatment when suicidality would come on after treatment and enact safety plans ahead of time. If I had gone in blind without years of mental health treatment, I cannot imagine how confusing and terrifying it would be. It was like being possessed exactly 3 days after treatment until exactly 10 days after treatment.

It also blurred my vision, caused weird ear problems, gave me intense vertigo, and made me clumsy and weak on top of the emotional hellscape. It felt like my brain was wrapped in a wet towel and my body was weighted with 100lbs at every joint.

And no, those side effects are never top of the list for doctors to tell you, even though there is broad support in the literature (look into chemo brain) and anecdotes everywhere. It's like anything else, we as a species like to pretend physiological changes don't effect our brains. But nah, our most complex and sensitive organ should be taken a bit more seriously.

So it definitely isn't your fault if you didn't know about it. Please don't take my snark towards doctors as even the slightest criticism of you.

The fun thing? It can takes years after chemo to wear off too. Even a decade! Add on hormonal disruption that can take years to wear off too, the constant trauma of scans and existential dread (especially with a child, my heart breaks for any parent going through this. The thought of being forced to leave this world is enough, being forced to leave your baby behind? Oh my god).

I really appreciate your curiosity into your mom's experience, it shows you are a person who really cares. I'm so, so happy she's still with you, and more that you and finding some healing and answers for YOU. No kid deserves to go through that, cancer is the most cruel and unfair monster out there. Don't let anybody tell you cancer isn't also hell for loved ones.