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.