My Personal DID Story

Hi, I’m Janet, and this is my story. I apologize, it’s long.

At age 20, we were a DID disaster (a DIDsaster?). We were officially diagnosed, open about it, and a total, complete, and highly unstable mess.

On the plus side, we got Social Security Disability on the first try. After seeing our records, the guy who did our in-person interview apologized for making us come in, and explained it was just a formality. Social Security then put us on a 7-year review cycle, which is the “improvement not expected” one.
Yup, we were that crazy. (For those of you not in the US, easily getting on disability here is NOT the norm. Denials and appeals are common, as is a 3-year review cycle.)

Being that crazy was a problem, though, not only because we were non-functional, but because we were transgender and wanted to transition. Hell, we NEEDED to transition, we had parts who were literally suicidal the dysphoria was so bad. But back in the 90s, you needed a psych evaluation just for hormones, and two independent psych evaluations for surgery. The guidelines back then were a lot stricter than today, and our chances of getting approved? They didn’t look good.

Obviously, then, we needed to “cure” our DID, right? Right.

Our brain must have decided that final fusion (then known as integration) sounded too hard. Creating a new alter, though? Oh yeah, that was easy. Creating a new alter that thinks she is the result of fusion, or perhaps that she never had DID in the first place? That’s good. Making her the new host? Even better. Convincing the system to mask as her and play into the charade? Genius.

It was simple. It was a matter of survival. Transition or die by suicide. (A real concern, we attempted it more than once.) Our brain and system knew how to survive above all else, so, poof, a new alter appeared, and the plan was put in motion.

That alter was me. I was the “cure”.

Were we really cured? No. I dissociated and had a TON of amnesia. But I had amnesia about my amnesia. I went so deep down into denial that I’m still digging out of it. We did have M2F sex reassignment surgery at 22, though. Mission successful? I guess. We became a lot more stable, and even went off disability and back to work after a few years.

I truly believed I was the only one until around age 29, when we majorly fell apart again. We went back into therapy, and were diagnosed with DID again. Son-of-a-bitch! I freaked out. My entire world was collapsing, but the system decided to become open about being multiple to friends and family again. I basically broke.

Lots of stuff happened around age 29. There were fusions, and Saoirse appeared. But for me it was all a nightmare come true. I couldn’t deal with the new reality. And since I couldn’t deal, the ruling council made a deal with me. I agreed to privately acknowledge that we were multiple, and they agreed to hide it from everyone. And boy did we hide it.

At 30, we moved to a different state where we didn’t know a single person. Yes, it was a location where we wanted to live – if you’re going to run, you may as well run somewhere nice – but we ran. Those friends that we had told? All contact severed. DID therapy? Stopped. Telling our new doctors we had DID? Oh hell no. We had Major Depression, yes, but dissociation? What’s that?

Saoirse & I basically tag teamed at work, and at home everyone was allowed to be themselves. We totally isolated ourselves, though, so we wouldn’t be discovered. It was lonely, but we were safe, and I could deal with it.

We got majorly depressed, though, and needed help and anti-depressants. Because we weren’t open about our dissociation, we began collecting new psychiatric diagnoses when we re-entered the mental health system. To be fair, our doctors did their best with the incomplete information they were given.

By 35, a new diagnostic picture had been firmly established. We were Bipolar and had complex PTSD. Groovy. Mood changes due to switching? Those were signs of rapid-cycling bipolar disorder! Hello, great explanation that didn’t have the stigma of DID, nice to meet you. Finally, something that can go on our charts and that even work can know about. Privately, we were fully aware of being a system. Publicly, I was bipolar!

The downside was that we were medicated for bipolar disorder.

We had bad reactions to most of the meds. The small number of times we’ve been fully manic have all been when our meds were being messed with – I think the meds caused the mania. I accept that we might really have a streak of Bipolar II in us, especially Saoirse, but atypical anti-psychotics were a fucking fourteen-year disaster that we’re just now putting behind us.

For years, we were on high doses of both Zyprexa and Abilify, because if one anti-psychotic didn’t cure us, why not try two at once? It took over a year to ween off Zyprexa, because we had withdrawals from hell. We also gained over 200 pounds while on it. (And have lost about 75 of that since stopping Zyprexa around the start of this year, with no change in diet or exercise.) Have we had any mania? Nope. We’ve been coming down very slowly on Abilify for the last few months and took our last pill a few days ago. So far, so good.

We’re still on the lowest maintenance dose of Lamictal, which is technically a bipolar med, but research has shown some positives of using it for both PTSD and depersonalization, so I’m not in a hurry to ease off it just yet. For the curious, we’re also on Prozac and Wellbutrin, because depression is a major issue for us. Gee, two anti-depressants with no anti-psychotic? If we were truly bipolar, wouldn’t that be a bad idea? Yes! Any sign of mania? Nope.

I’m getting ahead of myself.

Age 35 to 45 was my “bipolar period”. It was a great excuse, and armed with it, I became a little more social, even getting roommates at a couple of points. I was the host outside of work, and the system masked as me around other people, so, no problem, right? It didn’t affect my denial issues at all, right?

Hahahahaha.

I slowly became more and more convinced that I didn’t have DID. That did not go over well with my system, who were still very active. They tried to let me know, to show me the truth, but I reverted to my original program – I was the “cure”, I was the fused version, they had existed, but they didn’t exist any longer.

Now add some light physical and psychological trauma, oh, and the COVID lockdown… Pressure cooker explodes!!

It wasn’t unusual for me to skip time here and there, but it was an hour here, a day there, nothing huge, and the amnesia over having amnesia covered it. Then all hell broke loose. I skipped time for something like three months. It’s hard to ignore when the season suddenly changes on you. It’s harder to ignore when your alters truck you off to a hotel room, write you a “we need to talk” letter, and leave it as the only thing sitting out.

That was T-E-C’s 2020 Offsite Conference. Roughly two weeks, a hotel room, a laptop, and a journal. We wrote a lot to each other. It was a major turning point for us. It was a major turning point for me. I agreed to see a DID specialist. We hadn’t seen an actual specialist in over 20 years, just normal run of the mill psychiatrists and therapists.

It wasn’t a relief when we finally found the new therapist, however.

We’d been diagnosed at 19 as having DDNOS by a psychiatrist in an inpatient facility, who then referred us to a specialist psychologist/psychiatrist team for further testing. We were diagnosed as having DID. That’s two psychiatrists and a psychologist that said we were dealing with dissociation… but no, not good enough.

We were diagnosed as having DID again at 29 by a totally different psychiatrist in a different city who didn’t have our old records. But, no, it can’t be DID…

Now a therapist specializing in trauma and DID was telling me I had it. SHIT!

The count was now three psychiatrists, one psychologist, and one therapist who had said I had a dissociative disorder, four of which said it was DID, and one who referred me for further testing. Other than major depression, I haven’t received any other diagnosis as often throughout my mental health journey. I should have sat down and just finally accepted it, right?

Well, I tried. I blogged a little. I “came out” to friends as having DID (although not very loudly). I dissociated a lot, and Saoirse had to take over as host. Then, in 2022, I finally said, “that’s it, I can’t take it, I retire!”. I would have happily gone completely dormant. I did stop being as active.

I was so wound up that I couldn’t read about my own disorder without majorly dissociating. So, Saoirse did something sneaky. Yes, the dissociative.wiki was created to fight misinformation, but it was also intended to educate me in small bite sized pieces that I could digest.

I’m happy to say that as of last week, I’ve read this website cover to cover. Every wiki article. Every blog post. Every forum thread. Yes, my system has run the cafe & wiki for two years. I’m a little slow to catch up, but I finally made it. I can even watch a YouTube video about dissociation without dissociating now.

It’s only taken me 29 years to get somewhat comfortable with dissociation, and not want to hide my system at all costs. Heck, I’m even running for our ruling council this month. I’ve realized that I don’t have to be the alter I was created to be. I can be whoever I want, I don’t have to listen to my initial programming – I can rewrite my own code.

…at least until our next DID diagnosis. 😉

Thanks for listening to our DID journey from my perspective. Feel free to share yours!

t-e-c

The Electric Circus (t-e-c) is a dissociative system first diagnosed with DID in 1994. View their profile here.

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Dissociative Identity Disorder