Advice from an Older System

Blogs may include sensitive or triggering content. Reader discretion is advised.

These are some of the things T-E-C has learned over the 28 years since our first diagnosis of DID. (We’ve been diagnosed with a dissociative disorder multiple times over the years, but the first time was at age 19.)

First of all, you can expect to gather a large number of diagnoses. Our collection includes Major Depression, Bipolar I, Bipolar II, OCD, Generalized Anxiety, PTSD, schizoaffective disorder, DDNOS (now OSDD), and DID. In our 20s, we were desperate to find the “right” diagnosis, as if there would be one that fit perfectly and took away all doubt.  Sorry kids, it doesn’t exist.  Even with multiple DID diagnoses, done in different cities in different years, some of us still feel like imposters.

If people were colors, they’d be made of at least 16.7 million different shades. (Nerd points to those who know where that number comes from.) A diagnosis is like a crayon. Doctors take those crayons and try to draw a picture of the person. As you might suspect, even if they have the cool 64 crayon box with the sharpener, they aren’t going to be able to do 16.7 million colors justice. There is always going to be stuff that isn’t drawn quite right AND THAT’S OK. You are not a diagnosis, stop trying to completely fit into one. You want to find doctors and therapists who will treat you holistically, and not try to put you into a neat box.

One thing we went through, and it looks like new systems still go through, is wondering if we were “doing it right”. There can be a kind of pressure to clearly differentiate between alters and to be more overt in presentation.  You don’t need to do that if you aren’t comfortable with it.  The majority of DID systems are largely covert, including ours when we’re around other people.  We’ve also seen a lot of questions of the “can you do this in DID?” variety on social media, like permission is somehow needed from the dissociative police. Perfectionists at compartmentalizing, newly discovered systems may want to fit a text book definition.  Life, though, is messier.

Our advice is to be the most authentic version of yourself/yourselves you can safely be each day, and don’t worry about the text book definitions. In the end, what matters is that you continue getting better. There are many paths on that journey, and its OK to wander a bit to discover yours. Does traditional talk therapy seem to help? Do it. Does it seem to just trigger you all the time and destabilize the system? Perhaps its time to look into alternatives like somatic therapy or art therapy. Does your therapist or doctor actually help you? If not, find a new one, even if you’ve had the present one for several years.  It’s possible to learn all you can from one source and there is a time to move on.

Another thing that we wish we knew 28 years ago is that there is no medication to specifically treat OSDD/DID. Yes, there are anti-depressants, medication for PTSD nightmares, and so on which may help. But overall, there isn’t a “stop dissociating” pill.  Don’t waste your time seeking one.  That doesn’t mean you shouldn’t get treatment for co-morbid conditions if they are actually valid, and not just misdiagnoses by doctors inexperienced with dissociative disorders.

If you try a medication that doesn’t work for you, It’s OK to ask your psych doctor to go off of it. (Stopping some psychiatric meds cold-turkey can be dangerous and/or come with severe withdrawals, always work with your doctor to ease off.) Also, be prepared that different alters can actually react to the same medication in different ways. And, know that it can take YEARS to work out a good medication cocktail. Don’t try to rush it, and don’t judge a psychiatric medication by how it works right at first.  Each med tweak deserves several weeks or months for your system to adjust.  Side effects can go away after a few weeks.  Unless its a severe reaction where you bust out in hives, start halluncinating or go manic, give it some time.

Not everyone needs to know you have DID, especially at work and in your career. Masking and trying to present as a single person may be exhausting, but it may also save your paycheck. DID is often an invisible disability, and while that can stink, you can also take advantage of that invisibility to avoid people’s biases, unconscious or no. Again, it goes back to being the most authentic version of yourselves that you can SAFELY be.  It may not be safe to let your workplace know.  If we’re dissociating a lot, we often request a leave of absence for issues related to PTSD and/or some form of depression, because those are usually involved as well.

Finally, learn the great art of not giving a f*ck what random people think. 😉  That subject may deserve its own blog post.  Do you think we should write more on that topic?

Do you have any advice?  Leave a comment below.

#advice #did

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1 year ago

While not worrying about textbook definitions is nice, there can be a great deal of validation in getting the correct diagnosis. Knowing what you are dealing with, and that you are not alone with your struggles, can be reassuring.

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