For years I floundered, looking for what was “wrong” with me, recycling the same unanswerable questions to mentor after mentor, therapist after therapist, friend after friend—Why can’t I remember that? Why did I choose to do that? Am I crazy? Who are you again? Luckily, with the help of a wonderful therapist, the crux of an unbelievable support system of loved ones & professionals, we stumbled towards a bit of an answer in early 2017—Dissociative Identity Disorder.
However, often one answer begets a new slew of questions: What caused this disorder? How should I feel about this or that episode? What responsibilities and needs do I have for my loved ones and my community in terms of safety, advocacy, and self-care? These questions & more pour from my mouth & the caring mouths of others. Through therapy, a stack of books and articles, & my own journey through selves-discovery & other internal work, I feel like I’m on a good path, fairly stable, consistent, and (gasp) “normal.”
I’m very fortunate to have such a solid group of loved ones that have listened with open-mind & open-heart, held me accountable in reconciling my past & securing my future, & done their own work to educate themselves about DID as a disorder and my particular case with its particular needs. I was discussing with a friend how it’s necessary for folks with DID, as well as other disorders like PTSD, not only to have support, but the right kind of support, fully-committed & healing-focused. Of course, not everyone is capable of that because of certain circumstances in their own life, & I totally respect that.
However, I am typing through tears of gratitude for those folks who dealt with discomfort (or worse) to ask what they can do to support us in this journey. I figured, heck, it’d probably be a good post, as Pee-Wee put it, to write an article of tips for helping folks with DID and their families, from our perspective, an article we wish we could’ve found when I was first diagnosed.
Starting research & brainstorming for this post, I asked myself, Pee-Wee, & others about tips they have for people learning about, dealing with, & understanding DID. I was also curious about what they’d learned from witnessing my spells—what worked & what didn’t, both in dealing with me & handling their own emotions in & after the moment.
Of course, each case of DID is very personal, having its own systems & needs. This is my best attempt at describing my specific needs, being humble in asking for help, & hopefully providing folks who choose to be a part of my journey or are going through their own dissociative situation (as either a loved one or a patient) with some perspective.
Be Here If You Can
If you are in, my biggest suggestion is doing some of your own reading / work about DID (or any other psychological disorder for that matter). This step will help you reach a level that you’re capable of on your own without the person with the disorder having to coach / teach you; that energy & time can instead be spent on learning how your relationship bisects their particular case, how their disorder operates personally, & setting boundaries that work for everyone.
In terms of materials, I had a life-changing moment, as did Pee-Wee, when I read The Stranger in the Mirror: Dissociation—The Hidden Epidemic by Dr. Marlene Steinberg & Maxine Schnall, an exploration of the psychological condition of dissociation that demystifies it, as well as provides case studies & tips. I’m also working on a review of a book called got parts? – An Insider’s Guide to Managing Life Successfully with Dissociative Identity Disorder by ATW for this blog. I’ll say more about it soon enough, but for now, I highly recommend it as a quick overview of the disorder, full of personal activities & useful resources for managing it. Here are some other online options for quick overviews & helpful tips: Resources from Sidran & DID info at Psychology Today. I’m also not anti-learning-about-DID-through-The-United-States-Of-Tara, especially Season 1; it was clearly well-researched & Pee-Wee & I have both remarked how we find both relatable situations & catharsis in the show. The important thing is to develop your own understanding of the disorder before attempting to support & engage with someone’s specific case.
Say Goodbye If You Can’t
I’ve had enough loss & triggers in recent years; I don’t need someone who is skeptical of my disorder, isn’t willing to do the work, or is fragile in their own right trying to console, support, or assist me, & certainly, that person does not need the added stress of my disorder or a spell. Likewise, it is not helpful to only talk about my disorder, especially if neither of us are learning anything new about it. I’m not obligated to share all the time about my disorder; I also find comfort, joy, & learning experiences in conversing about other things, obviously. Someone in my support system needs to be able to balance their curiosity, their concern, & their general affection, a very tricky trio to handle.
For example, I had to cut out a friend recently who wanted to talk about the same thing over & over, a situation that happened three years ago, not even with him, one that I’d given all my available energy & knowledge of to him years ago. He couldn’t move beyond it in his misunderstanding of my disorder, and thus he was stunting my own development, as we could no longer collaborate in the ways that once helped us both grow—in poetry, with time in nature, on double dates with our wives, etc. As much as it hurts, I’ve also had friends cut ties with me because of reasons like fear, or other factors, as well as my having to end relationships with folks who had their own psychological or substance issues, ultimately the best move for both of us.
One of the most important things we’ve been working on in therapy & in my personal life is stress management. I’ve always spouted off the idea of “setting people up to be their best selves,” but I’m just discovering what that means pointed back towards myself, my disorder, & my alters. It has been proven that more stress, more exhaustion, & more anxiety causes my spells to increase, both in quantity & intensity. This got parts? book hones in on the idea of providing your alters access to their own needs & desires, so reducing my own stress also allows me to provide them the time, comfort, & space they need. Here are a few basic steps I’m taking that might be helpful for others:
Lowering my stress / prepping for stress – This could be asking a lot, but as best as you can, any help in lowering my stress or prepping me for stress is greatly appreciated. This includes but is not limited to: being straight-forward with me about your own needs & feelings, forgiving me for my bad memory, not cancelling on me, letting me know who & what to expect in situations, etc.
Shrinking obligations – Pee-Wee & I are both highly scheduled, highly social, & very much “on-the-go” people. Lately, we have been lowering our amount of programmed time, tightening our social network, & allowing ourselves more downtime or at-home time. Don’t take it personally, please.
Work life – As I detailed in my previous post, I have made some realizations about my capabilities as a working adult, namely that I cannot work in education any longer & that my ability to work full-time might not be stellar right now. Yes, this is a sore subject currently. While I might seem capable of certain things outwardly, especially professionally, the required energy & possible volatility of my condition internally has made certain situations problematic.
Don’t bother my support system – If you bother Pee-Wee, my close friends, or my family about my disorder, my actions, or my reconciling of my past, you probably won’t get an alter, but you will get annoyed Tyler, which certainly doesn’t help me stay leveled. Yes, they know about my disorder, my alters, my capabilities. Yes, they are holding me accountable. No, they are not obligated to long conversations or time spent dealing with you (they expend enough time & energy on my crazy ass, in addition to their own good lives). No, they do not justify my actions or think this is “an excuse.”
Don’t Try To Do Too Much
The best thing you can do is listen to me (or Pee-Wee/friends who have more experience). I’m practicing being more open about my disorder & have trained myself to alert folks of what I need when I feel triggers or anxieties approaching. Often my best method for preventing a spell or damage is to either go away or ask abruptly for others to go away or stop. The natural reaction to this, understandably, is often to push back, or take it personally, or attempt to de-escalate. Trust me when I say these methods do not help the situation, as right as they might sound / feel. If I can go, please let me, or if you can go, please do, when requested.
I had a friend recently try to “de-escalate” the situation after he began to trigger one of my alters, using tactics he’d learned in working with young students. It is important to remember that though I have a child alter & an alter with an “anger problem,” these alternative states do not respond predictably or rationally to tactics such as this. Unfortunately, he refused my repeated requests to please end the difficult conversation & leave; I could feel the physical symptoms (sweating, shaking hands, blurred vision) & loss of coherent thinking / speech / memory that often comes with the switching to my alter Vinny, a control freak who will scare away or get rid of “threats” by any means necessary. Instead of one of us walking away & returning to the difficult conversation at another time when we’re both better prepared, I switched into Vinny.
If I express concern of switching & you do feel capable of preventing a spell, the best method is through grounding. I had a therapist teach Pee-Wee & I a simple grounding tactic that we’ve both utilized successfully dozens of times. It helps to engage all five senses in order to stay present, so the tip is asking “what do you hear / smell / taste / see / feel?” one-at-a-time over & over till the triggering feeling has subsided. Other grounding methods can be saying who you are, our relationship, & a comforting fact, like “My name is Pee-Wee. I am your wife. We are enjoying a nice, safe evening out to eat with our friends,” can also help me to not switch. In general, It works best to deploy facts, not feelings.
If I have switched, there’s no magic button that we know of to ground me or bring me back, unfortunately. Pee-Wee & a couple other trusted folks can bring me to co-consciousness, where I can be present / engaged in the presence of an alter, & my dog Ginny Bug has shown capable of helping me transition out of Vinny or other alters into the child alter, whom we call Little Bobby. The best you can do is leave me alone & listen to Pee-Wee & a couple other trusted folks. Whether you are part of the incitement or not, whether you feel hurt or not, in the midst of a spell is not the time to do anything about it.
We saw this first hand with my friend Geoff about a year ago, right after my diagnosis. Someone he knew threw a beer bottle at a couple friends of mine, a fight broke out, & after Geoff had taken the guy outside & I guided the other friends to the other end of the bar, I went outside to check on Geoff. That’s the last thing I remember. Apparently, I took something Geoff said offensively, not thinking he did enough to settle the situation, so Vinny came out & started to chastise the bottle thrower & then Geoff. Clearly, this was wrong of me & hurtful to Geoff; understandably, Geoff repeatedly attempted to intercept me, apologize, & “right” the situation, a very kind gesture but one that was doomed in this particular scenario.
A couple interesting things happened during that spell. One, we learned that two friends, Ricky & Michael, could ground me, or at least push me towards co-consciousness, something I had been working on with my therapist. When they would approach me, Vinny would recede, & I would become coherent, saying things like “Things aren’t going well are they” or “Please tell Geoff to stay away from me.” I also began to understand Vinny’s use of language, as told to me later by witnesses—he will throw whatever is in his grab bag to cause fear & discomfort in an effort to get rid of “threats.” This night, I shouted projections about my own relationship with my then-fiance, threats that had been made to me in other situations, and more in a flailing effort to “control” the situation. This episode has become both one of the most emblematic of the Vinny alter & one I feel saddest / most guilty about.
In their own ways, these two friends in each story I’ve shared were trying to do the right thing, but it failed because the right thing in most normal, social situations does not work with my alters, especially Vinny. You need to give me time & space to switch back, to recover (these spells are very draining emotionally & physically), & to process what I can on my own before offering witness, reconciliation, & apologies back to our friendship. The spells can often be very disturbing or confusing to those others who experience it, so it’s also proven useful to have time to process for your own sake.
This post felt necessary, like I said, following a great conversation with Pee-Wee, about the lack of personal, real-life “tips” for folks with DID & their loved ones. In addition to helping the friends & loved ones who read this blog, I hope this can help others with alters explain their specific needs to their trusted circle & I hope this gives a framework for loved ones, past / present / future, in caring for folks with DID. It is a strange, frustrating disorder for all, but I believe only in working together, as a system & a community can we create anything sustainable out of this mess.
I often process the frictions, factions, & fumbles in my social life through my poems. After writing this post, I galloped back to see what poems might slide nicely here. Thinking of this idea of "How Do I Help?" here are a few:
RESISTANCE TO LIGHT
A dove is stranded on the road towards Rome!
O do care to trample gently in return.
In fretting, anxiety, I came to view
The well-washed window, okay? Do you, do you
Find risk in my sly questions? My primary
Drug: when I dare invent these miserable
Reasons to call. Persistence never soothes
The mind, never stretched the illumination
Long enough to notice the chair has a spine
In it still. No more houses for the bad guys!
Let them fucks walk down to the concerned teeth
Of the anchored village, and shame on the boats
Guffawing existence in the pain of y'all.
Ah, diverse swearing—in the world not so pure
And in apology—it's significant
No one is innocent. By, Nancy, your lungs
Might obscure the heat in my vial of blood,
The port of my late travesty. An echo,
Firm & scandalizing, comes disappointingly
To drop down by the alternative garden
—a farce, an anchor guaranteeing death &
No money—I say tata & with others fly beyond Rome...
It was very important
When you leaned towards the camera
To say I see you & made this
A pleasant place to be, though it smells
Like seven rotten pumpkins
Because nothing is as what it is
As it is not what you think.
It is nice when someone promises
& is attentive to be sure
The gap in the gate of the new fence
Around the old parking lot
Gasps wide enough for your vehicle
To exit. Else the newness
It becomes useless. It does not sound
Very important, but yes,
It is true: the love I need can fit
Inside my truck, or the cloud
Shaped like Lincoln ending this poem.
Get off the internet, Diana. It is yours.
What is? Your birthday, but not
Just any birthday. 31. The Reggie
Miller birthday. A terrible-twos
Away from your Jesus
Birthday. An inversion of the number
Some wacko declared unlucky
Though he himself probably lived
For least a couple iterations of such.
Lately, the talk is hospitality, so here
Is a chair, is a pizza, is another
Chair for your tired feet. The massage
Of a lifetime like ducks skittering
Straight across the top of my pond.
As a baby, I did not know
You & even if we had crossed, had lives
Under the same awning, I would not
Remember you. This is not an argument,
But gratitude as loud as time.
What joy to know you, to love you now,
To eat duck fat fries & stumble
Up the dirty stairs together. You cannot spell
Bold without old, hospitality without hospital.
I would lose my watch if not attached
To my wrist, my head if it not sewn
To you, forever or several Reggie Millers over.