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Struggling with living with Dissociative Identity Disorder

theponiesplazaNew Contributor11 Apr 2024, 4:40 pm AEST

Struggling with living with Dissociative Identity Disorder

Hi, my name is Angel and I'm the main host of a gender-diverse dissociative identity system. I had a psychotic episode around about 2 months ago, in which I discovered I had DID, and ended up in a psych ward where I received treatment and was diagnosed with Bipolar.

I'm regularly seeing a therapist bi-weekly and I've just gotten full time employment but I am still very much non-functioning, I struggle to get through each and every day and spend most of my time distracting myself, I've also gotten into fights with other alters over putting my own needs before theirs. As a whole we have different diaries in which we write things down but majority of the time we can't think of anything to write down and we know so very little about ourselves and even less about each other. We maybe have one or two interests that we know about per alter (including myself) and if we were asked questions about ourselves majority of the time our answers would be "I don't know".

We currently have 8 different alters, however one of these, Alice, has become dormant and none of us have seen her in weeks. There's also extreme difficulties navigating the different ages and genders of the alters as our alters, Athena and Spike, are 16 and 14 and struggle with the real responsibilities that come with being an adult and navigating society without any guidance or outside help.

We are autistic and though we are 21 years old we feel as though we've only just learned to properly communicate our wants and needs, but at the same time we feel ashamed and as if the 21 years has been wasted and that we need to grow up.

Whenever we see people online with DID who have everything figured out, we have an immense feeling of jealousy and just wish that we were able to understand ourselves the way they seem to be able to understand themselves.

Ultimately we feel like we're in a sense of limbo - our alters are fully formed but yet know next to nothing about themselves and we want to be able to find something to do so at least we know that we are making some sort of progress and we aren't letting time escape us.

4 replies

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In response to: Struggling with living with Dissociative Identity Disorder

JynxModerator11 Apr 2024, 5:30 pm AEST

Re: Struggling with living with Dissociative Identity Disorder

Hey there @theponiesplaza and a big 'welcome to the forums' to your whole system!

I am really glad you've found us, and I hope that this community can provide a safe space for you to feel heard and understood. It sounds like this is all very fresh, with it only being two months since you discovered you have DID! I don't know how much of a comfort this will be, but I think in such early days of diagnosis and treatment, it's okay to feel pretty lost and overwhelmed. It's a whole new way of understanding yourselves after all.

I can definitely relate to the idea of being quite 'late to the party' when it comes to recognising and communicating my needs. My own trauma response has involved a lot of 'fawning' behaviours (I actually did a big ramble about this recently, you can read more here) and for the longest time, I couldn't even identify my own needs, let alone communicate them. It can take time to build new habits around communicating our needs and our boundaries, and it's awesome that you're recognising that this is an area of growth for you.

I imagine that it is extra challenging to be trying to balance the needs of everyone within your system, whilst also functioning in a society that still doesn't have a lot of understanding for complex mental health stuff. It will probably take time to find balance and flow. I kinda picture that it's like you're finally able to see all the parts of yourself properly. It might take time for you all to get to know one another.

On that note - I know how hard it can be to see others with similar circumstances who seem to be thriving. It reminds us of how far we have to go, how painful things are right now. It doesn't mean you won't get there yourself! Those people might be many years into their journey, and it's also very possible that they're presenting the best version of themself in an online space, and that there could be other struggles or challenges that we don't get to see.

Sounds like you're all just learning about each other and getting to know each other. Maybe you could ask your therapist for some help in facilitating that process! Like a group meet n greet session, where you can all ask each other questions and share and stuff. I dunno, food for thought. And if your alters ever want to participate on forums too, they're welcome to introduce themselves and come join the conversation 😊

If you're interested, we've got an ASD social space, and an LGBTQAI+ social space, too! Hope you find what you're looking for here, and you're always welcome to reach out to the team if you ever need support 💜

In response to: Struggling with living with Dissociative Identity Disorder

MermaidHairSenior Contributor11 Apr 2024, 8:29 pm AEST

Re: Struggling with living with Dissociative Identity Disorder

@theponiesplaza Hi Angel, it's nice to meet you, I'm so glad you're here!

I can relate to what you say about seeing others on their journeys and feeling like they are so far ahead and have it all figured out. I have felt this way too with my conditions and feeling like others understand and manage it all so much better than I can. I think given you were only diagnosed 2 months ago and everything you have explained here, it sounds like you have uncovered quite a lot and have made really good progress. It can be hard not to compare ourselves to others but try to remember that everybody once started out where you are now.

I don't have DID but I have lost a lot of time to dissociation so I feel for you there. I hope you'll be kind to yourself, all of yourself, and the forums are always here if you need a place to chat or vent 💜

In response to: Struggling with living with Dissociative Identity Disorder

Jasper_123Senior Contributor16 Apr 2024, 12:15 pm AEST

Re: Struggling with living with Dissociative Identity Disorder

Hello @theponiesplaza !!

I don't have much understanding of DID but I think that an idea for yourselves is for the host to find some character building questions (the type authors use) and write these in the diary for the different alters to answer. For eg. What's your favourite food? What's your favourite movie? This should help you get a better sense of your selves! I have BPD and so related to this lack of knowing the self and feeling behind in life but I can assure you that at 21 you are just a baby adult, life is long and goes at your own pace.

In response to: Struggling with living with Dissociative Identity Disorder

LilMapleLeafSenior Contributor16 Apr 2024, 3:52 pm AEST

Re: Struggling with living with Dissociative Identity Disorder

@theponiesplaza

Welcome!

I just wanted to jump on and say that no body has it all figured out. There are people in their 60s, 70s, 80s who still can't express their needs or know themself at all! Some people spend their entire life never figuring it out. The fact that you are able to recognise those skills are ones you want to develop is huge and such an indicator of maturity.

I secretly believe that no body has life figured out and we are all just faking it till we make it. So don't stress about your timeline, be proud of how far you've come and what you've learnt so far.

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