ECT and stigma and feeling alone

[RoseK]

Hey everyone, 

I have had many ECT treatments and I’m 25. I find it really hard to be doing this sort of treatment and have it so stigmatised and having to keep my mouth shut due to the way I am viewed when people find out. I feel really alone. No one I know has ever had it and I can’t find any sort of support groups for those having the same treatment. I feel like stigma surrounding it hasn’t improved since that “one flew over the cooocoo nest”. It’s really hurting feeling on such an out and being silent. I even looked on the public hospital websites in my area, I know they do ECT but it wasn’t even acknowledged, only tms. My doctor has told me he doesn’t believe tms will help me and so that’s not an option and really only for mild depression. Anyone else suffer with the same sort of isolation/lack of support? 

[geoff]

Hello RoseK, firstly I'm struggling with these new forum revamp as it's not as user friendly as before, but in regard to your question copy and paste this 'https://saneforums.org/t5/Our-stories/ECT-Treatment/td-p/534463'.

I know of someone who has had ECT several times and again they were in the same boat, fearful of even raising the topic because of the movie you mentioned.

They did sort of believe it did help them but only to a certain extent, but their medication was changed to another brand which has helped them.

Have a look at the link and please let us know.

Geoff.

[Bob_22]

Hi RoseK,

Thank you for posting to the forums and for sharing you isolation regarding ECT. I can empathise with you when you say it is difficult to find others who have had experience with ECT. For myself, diagnosed with major depressive disorder, I have undergone ECT for three separate episodes of depression which in my opinion have been highly beneficial (please note that everyone responds uniquely as advised by my doctor). Regardless of this, I am aware there is much stigma surrounding the treatment especially in reference to 'one flew over the cuckoo's nest' and other media. 

Unfortunately, even though there are mountains evidence around ECT, it's benefits, efficacy and safety (refer to beyond blue page of ECT and look under 'sources' for evidence and references for a sliver) it is generally not spoken about since it is not commonly experienced. You will find on the forums here that several members bravely share their experience and I hope through this you find support. 

I also still struggle to share my journey with even my close friends due to the sensitive nature of treatments. I expect in time that stigma around ECT will start to fade as it has for mental health in general. In the meantime, please know that you are not alone and don't be afraid to discuss your treatment with your psychiatrist or GP if you have any future hesitations around side effects or other treatment options. 

Hope this helps,

Bob

[H2Ohog]

I am currently in hospital and starting my second course of ECT. I understand how you’re feeling. It’s so common for people to react in a very strange way to having ECT - even here in a mental health facility. Of the 20 patients here there are only 2 of us having ECT yet I found that I did get benefit from it last time. I’m determined now to not care about others reactions and just to be grateful that I get relief and help from ECT. Maybe you can start some sort of online support for ECT? Most people seem surprised that it even still exists as it’s association with movies where it is shown as a bit barbaric! 

[r0b]

Hey RoseK, I have just recently finished an acute course of ECT, and to be honest it makes me feel really weird knowing I've had it and what actually goes on.  I think it has helped (although my ex broke up with me in the most horrible of ways while I was still in hospital getting it done) but I'm having a pretty tough time getting back on with life, work, etc.

[Bob_22]

Hi r0b,

Congratulations on finishing a course of ECT. I hope it was smooth for the most part. I am glad that it has somewhat helped. Adjusting to life after ECT can be complex. As you mentioned, you have been through quite a drastic series of surgeries in a short time span. On top of that you've had to deal with your break up and changing mood as well as amnesia due to ECT. I found that over time my mental health and memory continued to improve after ECT, especially once I was back into a routine. You might find the same. If you experience any complications such as chronic headaches or anything please follow up with your psychiatrist.

I would suggest in the mean time, gently easing your way back into your daily routines. Don't try to rush anything or go back to full capacity. Be sure to stay on top of your mental health and engage in things you enjoy. Also be sure to touch base with friends, family and professionals.

Hope that helps.

Bob

[H2Ohog]

what a relief it is to hear people talk about ECT. We really need re-education as a society about the benefits and results and take away the “shock treatment” that is perceived as. Even when it was suggested to me as a course of treatment I resisted simply because of the stigma associated. I didn’t tell even some of my closest friends or family that I was having ECT. I was worried that the medical certificate for work would say I was in hospital receiving ECT and was so relieved when it didn’t. How sad is it when a legitimate treatment that works is viewed like this. Another complexity when dealing with major depression! 

I hope you find the longer term relief I have, and maybe we will all be brave enough one day to be proud of the giant, enormous step we have taken to seek treatment - especially a treatment that is so stigmatised. 

[Oshinxx1]

Hi RoseK,

I appreciate that your post is 3 years old however I can relate to what you are experiencing and although I am sorry you are feeling this way, it is good to know I am not alone.

Only two family members know about it and although I am not ashamed, I am afraid to tell anyone due to past experiences of opening up, also my family members don't like me mentioning it. To make matters worse I have had no follow up after 12 sessions due to my Doctor being away. You are right about the stigma, I think there is still a lot of stigma about mental health in general, things like 'are you okay days' are just superficial because in my experience talking to people has cause me to lose friends, cause tension in relationships and lose jobs. 

An additional factor is the memory loss, it is hard to explain it and the whole thing leads to more isolation. 

It is an intense thing to go through and keep to yourself. For me things haven't improved however I stress that this was just my experience and I am not saying people shouldn't consider it, just my experience. 

I hope you are doing okay.

[RoseK]

Hey Oshinxx1, 

I’m really glad that my post can help you feel less alone. It’s so hard when your family isn’t receptive to it. I experienced a similar thing. The memory loss was difficult too. I tried to just say things to people like “I’ve been unwell and so my memory is quite foggy at the moment.” A lot of the time when I said that people didn’t ask why because by not volunteering the info they realise they can’t ask. But also, you might find people are more receptive than you think. There were definitely family and friends who weren’t and I still don’t like making it common knowledge but I found when I opened up to friends they were all so so supportive. They initially were shocked but when I explained it’s like “a medical procedure, there’s no physical seizure, all under anaesthetic” they seemed to really become a lot more accepting. I have ended up telling so many people. Because (I hope this happens for you) but it took about 24 treatments and my memory got very bad but my mood got better. I then went on to have countless sessions and eventually reduced to like once a fortnight. But it worked! And I really do think it has probably saved my life. I found the right meds and I don’t need it anymore but it’s a great tool to have. I really hope that you start to notice a benefit soon too. Can you give it more of a go or is your doctor wanting you to stop? Obviously everyone is different but my personal experience was that it took a while to work, but it did work. My memory is also back to normal!! And I was lost getting from my house to the grocery store. Like my memory got terrible, but it got better. I still only have small memories from the time and around the time. Taking photos of everything helps, give that a go. It jogs memory well I found. But my memory now is fine and I know I can recall things perfect now (but my memories from the actual time are still missing, but the reality was that not much was happening anyway at the time I want to remember) 

You really aren’t alone. The stigma is changing. If your family aren’t supportive you could consider opening up to a friend? Know that it’s so brave if you to try it and your an absolute fighter for doing it. Treatment is hard cause it feels so lonely. There’s no flowers and gifts like people who have physical health conditions have. But you should be proud of yourself for fighting for your health. I also found that most people who are probably 40 or younger seem to have no idea what it even is!! Know there’s lots of people out there struggling with the same thing. I ended up talking about it more freely at the end. It worked and it saved my life and I want others to know it can work and is so worth it. It will get better. The memory will improve with time, it’s scary but it really will. You’ve got this and you aren’t alone!! 

[Oshinxx1]

Hi RoseK

Thank you for your reply, much appreciated. I think when my Doctor gets back it will be better, even the hospital said it wasn’t ideal to not have them available after the procedure. The memory issues are not a huge problem just a weird thing, like writing this, I forget what I was going to say but mainly comes back. Like you said , I too pass it off as ‘just me’ and a ‘procedure’ I have had if need be. 
I was an outpatient which adds the complexity of straddling to lives of sorts. 

my family is only very small but do there best and do appreciate them, I think what I meant was it’s hard because they haven’t had it so it can only go so far. 

thanks again, hope you are well.