Mood disorder and autism

[if6wasnin9]

I've had severe mood disorder almost 50 years, taken every drug and tons of ECT with little relief. And dozens of hospitalizations, abused in hospitals. I'm severe bipolar and meds have helped last 6 months and now I'm told I'm autistic, too. And my NP said I'm schizophrenic.
I tell her I don't feel anything and consequently have trouble relating to myself and enjoying myself. She tells me it's the meds and I say "No, I've felt like this since I was 14". I started dissociating when I was 14 and felt numb. She is one of the better Drs I've seen but she doesn't care if I improve and enjoy myself. Most Drs I've seen were completely incompetent. What do I do? I can't get thru to anyone that I feel numb and confused most of the time! These Drs don't care if you improve or not! It's a scam! I was in Johns Hopkins 8x and they didn't want to know anything about me, I couldn't believe it! It was a malpractice suit! A stupid Resident laughed after ECT made me hallucinate after 5 treatments! It wasn't funny, goddamnit!!!

 

[Jumpinbare]

A patient cured is a customer lost.

 

[Neonatal RRT]

Autism, ADHD, schizophrenia, mood disorders can overlap in some cases...imagine a Venn diagram.

"I tell her I don't feel anything and consequently have trouble relating to myself and enjoying myself...I've felt like this since I was 14." I am going to speculate here, but given your age now, but also that you've had symptoms since you were a teenager...a combination of low testosterone (given your age) but also a common autistic co-morbidity called alexithymia...difficulties with expressing and identifying one's emotions. I have alexithymia and have suffered from low testosterone (I am on testosterone replacement therapy now).

All I know is that when my testosterone was below 100, I was almost manic, irritable, but also numb, to the point of wanting to hurt myself just so that I could feel "something". Most people do not understand that when the endocrine system shuts down and there is a critical loss of testosterone it can drive you almost insane and with suicidal ideation. I distinctly remember having moments where I wanted to slam my car into something, just so I could be severely injured and feel something...I know, some disturbing, dark thoughts.

I think if you combine the autism...a low dopamine and low serotonin condition, with alexithymia...that feeling of "neutrality", but except for extremes, not being able to really enjoy things like others...and throw in some age-related or some other endocrine condition that results in a critical drop in testosterone...that can be quite a serious situation. Then throw in the bipolar and schizophrenia and things are more or less uncontrollable...and I can certainly empathize and sympathize with that.

The situation with the doctors...I am wondering if this is some form of autism-related communication difficulty combined with a cognitive bias on their end. Most physicians will have some understanding of childhood autism, but be totally oblivious and ignorant of adult autism. I know this because I have worked in one of the largest children's hospitals in the US for nearly 40 years. We deal with autistic children every day...but these same staff members...nurses, doctors, and therapists will be totally oblivious to the fact that they have autistic staff members that work along side them. "You don't act autistic." No...I don't act like an autistic child. If you are over 18 and autistic in the US...you're on your own...doctors and insurance companies pretend you don't exist.

Given my condition and knowing that I can have some communication difficulties...and knowing all about cognitive bias within the medical field...I have found that walking into the appointment with a written Word document of all my concerns, symptoms, diet, supplements, medications...all of it...sometimes pages of information is often appreciated. I receive positive comments on this repeatedly. "No one does this...Wow!...Thanks!...Can I keep this?" However, what it does is limit the questions...because you've given them so much information...but also, if you have communication difficulties, you've been able to express your concerns without them interrupting your train of thought. It allows me to have more control over the narrative.

 

[Grondhammar]

^^^
everything @Neonatal RRT said

I'll just add that I don't know if there's a medical term for emotional numbness, but it's definitely real. Alexithymia is defined as difficulty assessing and describing emotions. But if there's nothing at all there to assess/describe (along with overlapping alexithymia, autism, and schizophrenia as mentioned above) it's particularly confusing for normies.

I know what this is like, and I know what it's like to try to describe it to people. It's especially difficult when I get asked, "How do you feel about (whatever)?" I instantly revert to mask mode and make something up. I'm trying to become more real and not do that, but people just don't believe me when I say, "I have no feeling at all about that, or anything else really." It's unsettling to them.

ICD codes (and/or the DSM in the USA) exist due to insurance. These allow healthcare providers to bucket people so insurance carriers can attach codes to those people. When the codes are insufficient or don't fit the patient neatly, healthcare providers (who "grew up" in school with ICD/DSM as their diagnostic guide) will just refuse to believe that anyone could fall outside of the codes.

There are some therapists/doctors who will look at you as an individual rather than a collection of DSM labels. I hope you can find someone like that. It takes a lot of patience to put up with the system that long, though. I think @Neonatal RRT 's suggestion of writing it all out and handing it to a provider is excellent! Will have to adopt that myself.