Lived Experience Forum

[idek]

Ok.

I thought I'd share my journey so far living with a Schizo-Affective diagnosis, especially given that Schizo-Affective disorder specifically doesn't really seem to have much info to look up.

If you're reading this and have been given this diagnosis as well, these are some tips that I kinda wish I'd been told at the beginning of this journey that I hope are helpful:

1. Do your own research

This is kinda tricky, as right now, as far as I know, it's not extremely well known or at least talked about. The way I've gotten to understand my diagnosis better is by searching up "Schizo-Affective Disorder," "Bipolar Disorder," and "Schizophrenia" and then sort of figuring out what applies and what doesn't. As I'm sure you can imagine, this has been super fun.

The reason I wish I knew this sooner is because, in my experience, the less something is understood, the more it is feared. I basically didn't understand what was happening when diagnosed and now that I understand my diagnosis better, I don't really fear it anymore, which has been very liberating.

2. Ditch substances

This is also a pretty tricky one. For more reasons than I'm probably even capable of understanding. For me, even socially accepted substances such as coffee have been more trouble than they're worth.

So many people will tell you to do this. For me, it was really difficult to fully understand why, not to mention, I rarely wanted to help myself in the beginning. Once I finally did, life was much smoother sailing.

3. Practice self-care and self-love especially

Doing this was strange to me at first, but during an episode, funnily enough, it actually kinda clicked. 

I realised that I am a person. And as a person, I am able to be treated in a certain way. And the really weird part for me was that I am a person who can treat myself a certain way.

I realised how incredibly critical and harsh I had been with myself. 

That's when I decided, during this strange epiphany, that I was going to treat myself the way I tried my best to treat others. With compassion.

And finally,

4. Remember that your mental health journey is your own

I actually had a psychologist convince me to do this, in a way, and I am extremely grateful.

I also have a belief that this applies to everyone's mental health journey.

I was told that I am more capable than I think (which was kinda true) and also told to basically take life by the horns. To me, my life was practically consumed by my diagnosis. So I decided to do something about it, rather than letting the people looking after me do all the work. 

I did my own research.

I stopped using substances.

I practiced self-care.

And I basically took matters into my own hands. 

Because you know what?

It is my life.

Being my life, it made sense that I was probably in the best position to change things.

All of these things were ridiculously hard.

But believe me, they were worth it.

This list is far from exhaustive but it's some of the more important things I've learned.

It's been pretty a pretty rough journey.

And I'm still not exactly where I want to be.

But I am happy to say I've come extremely far.

I know there is rarely a "one size fits all" kinda way of looking at mental health, but I thought I'd share, and I sincerely hope this helps people.

[Acanthiza]

Thanks for sharing @idek , I don't have schizo-affective just bipolar 2 but a lot of what you wrote applies. Definitely learning to be more forgiving to myself was critical in dealing with things.

I'm glad you are doing better and here's to the future as well

[NinjaTurtle]

Yes @idek thank-you, thank-you, thank-you! I was diagnosed with Schitzoaffective Disorder in 2014 and every day is still a struggle. Your post and advice gives me hope! Much appreciated!

[Tranquil_Atoms]

Wonderful write up! @idek 

I have a different diagnosis but I found the four steps you mentioned here to be the most impactful through out my own journey.

I too wish I had been told this at the beginning. 🙂