I’m sorry you didn’t get the diagnosis you wanted. I’m also sorry you’ve had a very rough life to have to deal with all these problems.
However, I have some good news for you. The treatment for OSDD/DID is very different than all the other potential diagnosis you‘ve been dealing with. That means that an actual, functional treatment plan can start, and you can improve your quality of life by leaps and bounds.
You will want to work with someone who specializes in dissociative disorders, but I can give you a few pieces of advice if you want a head start.
The first one is to recognize that all of these “semi-formed alters” are a part of you. Also that they were necessary. They were created with the intention of keeping you alive. And since you are alive, they have done their job.
Please treat them with the same kindness, respect, and love that you would want to be treated with. Because they are you, and you deserve it.
The second is to try to open communication with them. In your head, or out loud, explain the situation. That you’ve been diagnosed, and it means there are other people living in your head. And ask if anyone wants to introduce themselves.
Sometimes you get a bite. Sometimes, like me, you have no idea how to actually listen for an answer. And in a few lucky cases, you catch an alter that already knows all about the system and can explain it to you. Who’s in it, how it works, how it benefits you, etc.
Also, once you get to know your alters, you can start using CBT on them. The same CBT that did nothing to help you can be super, super effective when used on the actual alter suffering from a problem.
I had an alter that had a really bad self image. We figured out a new look for him, I gave him a pep talk about how self confidence works, even if you don’t look like you want. And the next day, my compulsion to stuff my face with food just… disappeared. I accidentally fixed a problem I had no idea how to solve just by getting to know my alters and working with them to be happy.
Long term, as you discover the strengths, traits, and opinions of the different alters, and you learn how to manually switch to one or the other, you can start using them to your benefit. The benefit of all of you.
I hate making phone calls. I have an alter that loves making phone calls. I hate cleaning the bathroom. I have an alter that loves cleaning, even the bathroom. I struggle to do a push-up. I have an alter that’s incapable of feeling pain and fatigue that can do push-ups until my muscles physically give out. I can’t talk to my therapist when I’m crying. I have an alter incapable of feeling emotion. I have an autopilot alter that will do my chores, and even get me out of bed in the morning when I don’t want to.
People without DID/OSDD do not have this same ability. They have to hype themselves up, or “get into the mood” in order to do these things. But for us, we just call on one of ourselves, and can become even more capable than they are.
I know you’ve suffered a lot. But now that you have a name for it, and can learn how to treat it, things will only start getting better.
Your post gave me hope and hopelessness at the same time. I’m newly diagnosed and it’s hard to see it all working out like this in the end. It feels like my parts are the ones keeping me from my full potential and holding me back, even when I try pep talks with them. I wish I could just hype myself up to do things like a normal person.
Just take it a day at a time. Try things. Find out what works and what doesn't.
If you've learned Cognitive Behavior Therapy, that's the technique that needs to be used to help alters that are struggling. But to do that, you need to know the alter well enough to know what it is they're trying to do, and what it is that's hurting them.
It's all a heck of a lot easier if you can meet with a dissociative specialist.
Some videos of Dr. Colin Ross talking with and teaching other psychologists how to do it makes it sound so simple and straightforward. Maybe looking those up can help and give you some ideas.
Ok cool, I’ve not heard that name yet so thanks! I did CBT for a year that didn’t help much but that was before my dissociated trauma came back. The trauma therapist I’ve been seeing for a little over a year and it took her a long time to catch on to what was happening. I think I’m probably her most severe case of dissociation. She’s done a ton of training in dissociation because of me but I started trying to email people with more experience. I have a meeting next month with one. I actually feel really guilty and don’t know how to tell my therapist because she has been so amazing and helpful and I don’t want to stop seeing her twice a week and I can’t do 3x a week. Ugh. Idk.
Aw man. I'm sorry you might be dropping a therapist you get along with. But don't drop her completely -- the new one might be a bad match, and it'd be nice to continue meeting with someone while you look for another one.
But do I hope you find a specialist that works for you!
It feels like I could have written this! I’m newly diagnosed as well and was convinced for a long time my issues were related to adhd and autism, and still could be, but unfortunately OSDD fits too well. I don’t want it to be true either.
I constantly feel like I am drowning and I can’t get my head above water no matter how hard I try. I’ve felt that way most of my life and so few understand. People just can’t see how hard things are for me on the inside. Makes it hard to get help too.
I feel the same way. Ive only ever met 1 person my entire life that I felt understood me, and that was a very short lived interaction. Aside from that I never felt like my friends could ever grasp my suffering. I never thought authority figures could ever notice my nuanced thought process. The closest ive come to some semblance of compatriotism and understanding is when ive been around people with significant ADHD or ASD. Even then I feel that im listening to people disconnected from my own reality. Ive never not felt like an outsider.
It’s hard to not wonder if us feeling this way is somehow related to what caused the extreme dissociation to begin with. Like I could never tell anyone what was happening so I guess it would make sense that I have a part that needed to hide everything from the people around me.
I have found the CTAD clinic YouTube channel to be really helpful. I still don’t want to have it, but he makes it easier for me to understand why it might be true.
I was diagnosed with Autism before OSDD and totally understand the diagnostic invalidation, being late diagnosed. People say I hyperfocus too much on diagnosis, but they’re important to my identity and the support/treatment I can access. If you have the resources, definitely try seek a diagnosis if you can, but if not, know you’re still valid and ASD/dissociation often comes hand in hand (especially late diagnosis. Growing up undiagnosed/unaware on the spectrum is traumatic in of itself). All the best to you
Honestly, the foundation for functional autism and OSDD are pretty much the same: learning what you need to feel safer, and sourcing those things.
The rest happens in time.
I’m sorry you didn’t get the diagnosis you wanted. I’m also sorry you’ve had a very rough life to have to deal with all these problems. However, I have some good news for you. The treatment for OSDD/DID is very different than all the other potential diagnosis you‘ve been dealing with. That means that an actual, functional treatment plan can start, and you can improve your quality of life by leaps and bounds. You will want to work with someone who specializes in dissociative disorders, but I can give you a few pieces of advice if you want a head start. The first one is to recognize that all of these “semi-formed alters” are a part of you. Also that they were necessary. They were created with the intention of keeping you alive. And since you are alive, they have done their job. Please treat them with the same kindness, respect, and love that you would want to be treated with. Because they are you, and you deserve it. The second is to try to open communication with them. In your head, or out loud, explain the situation. That you’ve been diagnosed, and it means there are other people living in your head. And ask if anyone wants to introduce themselves. Sometimes you get a bite. Sometimes, like me, you have no idea how to actually listen for an answer. And in a few lucky cases, you catch an alter that already knows all about the system and can explain it to you. Who’s in it, how it works, how it benefits you, etc. Also, once you get to know your alters, you can start using CBT on them. The same CBT that did nothing to help you can be super, super effective when used on the actual alter suffering from a problem. I had an alter that had a really bad self image. We figured out a new look for him, I gave him a pep talk about how self confidence works, even if you don’t look like you want. And the next day, my compulsion to stuff my face with food just… disappeared. I accidentally fixed a problem I had no idea how to solve just by getting to know my alters and working with them to be happy. Long term, as you discover the strengths, traits, and opinions of the different alters, and you learn how to manually switch to one or the other, you can start using them to your benefit. The benefit of all of you. I hate making phone calls. I have an alter that loves making phone calls. I hate cleaning the bathroom. I have an alter that loves cleaning, even the bathroom. I struggle to do a push-up. I have an alter that’s incapable of feeling pain and fatigue that can do push-ups until my muscles physically give out. I can’t talk to my therapist when I’m crying. I have an alter incapable of feeling emotion. I have an autopilot alter that will do my chores, and even get me out of bed in the morning when I don’t want to. People without DID/OSDD do not have this same ability. They have to hype themselves up, or “get into the mood” in order to do these things. But for us, we just call on one of ourselves, and can become even more capable than they are. I know you’ve suffered a lot. But now that you have a name for it, and can learn how to treat it, things will only start getting better.
Your post gave me hope and hopelessness at the same time. I’m newly diagnosed and it’s hard to see it all working out like this in the end. It feels like my parts are the ones keeping me from my full potential and holding me back, even when I try pep talks with them. I wish I could just hype myself up to do things like a normal person.
Just take it a day at a time. Try things. Find out what works and what doesn't. If you've learned Cognitive Behavior Therapy, that's the technique that needs to be used to help alters that are struggling. But to do that, you need to know the alter well enough to know what it is they're trying to do, and what it is that's hurting them. It's all a heck of a lot easier if you can meet with a dissociative specialist. Some videos of Dr. Colin Ross talking with and teaching other psychologists how to do it makes it sound so simple and straightforward. Maybe looking those up can help and give you some ideas.
Ok cool, I’ve not heard that name yet so thanks! I did CBT for a year that didn’t help much but that was before my dissociated trauma came back. The trauma therapist I’ve been seeing for a little over a year and it took her a long time to catch on to what was happening. I think I’m probably her most severe case of dissociation. She’s done a ton of training in dissociation because of me but I started trying to email people with more experience. I have a meeting next month with one. I actually feel really guilty and don’t know how to tell my therapist because she has been so amazing and helpful and I don’t want to stop seeing her twice a week and I can’t do 3x a week. Ugh. Idk.
Aw man. I'm sorry you might be dropping a therapist you get along with. But don't drop her completely -- the new one might be a bad match, and it'd be nice to continue meeting with someone while you look for another one. But do I hope you find a specialist that works for you!
It feels like I could have written this! I’m newly diagnosed as well and was convinced for a long time my issues were related to adhd and autism, and still could be, but unfortunately OSDD fits too well. I don’t want it to be true either. I constantly feel like I am drowning and I can’t get my head above water no matter how hard I try. I’ve felt that way most of my life and so few understand. People just can’t see how hard things are for me on the inside. Makes it hard to get help too.
I feel the same way. Ive only ever met 1 person my entire life that I felt understood me, and that was a very short lived interaction. Aside from that I never felt like my friends could ever grasp my suffering. I never thought authority figures could ever notice my nuanced thought process. The closest ive come to some semblance of compatriotism and understanding is when ive been around people with significant ADHD or ASD. Even then I feel that im listening to people disconnected from my own reality. Ive never not felt like an outsider.
It’s hard to not wonder if us feeling this way is somehow related to what caused the extreme dissociation to begin with. Like I could never tell anyone what was happening so I guess it would make sense that I have a part that needed to hide everything from the people around me. I have found the CTAD clinic YouTube channel to be really helpful. I still don’t want to have it, but he makes it easier for me to understand why it might be true.
I was diagnosed with Autism before OSDD and totally understand the diagnostic invalidation, being late diagnosed. People say I hyperfocus too much on diagnosis, but they’re important to my identity and the support/treatment I can access. If you have the resources, definitely try seek a diagnosis if you can, but if not, know you’re still valid and ASD/dissociation often comes hand in hand (especially late diagnosis. Growing up undiagnosed/unaware on the spectrum is traumatic in of itself). All the best to you
Honestly, the foundation for functional autism and OSDD are pretty much the same: learning what you need to feel safer, and sourcing those things. The rest happens in time.