What I Wish I Knew About Growing up With Dissociative Identity Disorder (DID)
This past Family Day in Canada (February 19, 2018), I spent the day with my sister. My adoptive sister, who is currently in the hospital because of an untimely meeting with a hungry polar bear. She has 54 staples and a nasty case of necrotizing fasciitis, or flesh-eating disease. She’s okay, don’t panic! It happens, and it is 100% treatable!
Having her in Toronto is something of a luxury, as her permanent residence is still in Nunavut. But without a sophisticated hospital setting, the medical teams weren’t equipped to handle my sister’s war wound. So, she is here, and I’m straight up capitalizing on her presence to fill in some of my memory gaps.
Why do I have memory gaps? And, why would I need my sister to fill them?
Well, it’s because I have Dissociative Identity Disorder (DID). Formerly known as Multiple Personality Disorder. A permanent and debilitating psychiatric injury caused by ongoing, significant, and severe trauma. Usually, a healthy child will have multiple alter states, and through non-traumatic and healthy development, these alter states become one singular identity. However, with incredible trauma amnestic walls will form around these alter states, thus isolating each alter state and allowing for individual growth.
I currently have 3 alters in addition to myself (I, as Bethany, am the host. I’m usually the dominant individual you’re more likely to meet):
First, we have Zacherie, or Zache as she likes to be called. Zache is the only alter that ages with me. If I am in a situation that is awkward or unsafe, Zache is usually the first to come out and get us out of that situation.
Second, we have one male alter; his name is Heinrich. Heinrich has been with me for approximately 22 years. My longest relationship with a man, ever. However, Heinrich does not age. He is 21 years old. He has been 21 forever. There are certain situations where Heinrich will come out and will either (1) pick a fight, or (2) leave a path destruction, chaos, and mayhem of varying degrees.
Third, we have a child alter, or a little as they are known, her name is Shoshanna. Shoshanna, like Heinrich, does not age. She is 10 years old. She is also the reason why I cannot legally consent to sexual acts.
So, you’re probably wondering what does this have to do with memory gaps or sexual health. Well, my lovely friends, my disability affects everything I do. Whenever an alter comes out, I have lengthy blackouts. I have no memories of that time. So, my sister is my memory keeper at the moment. But with these blackouts, every minute detail of my life is decided or chosen with my disability at the forefront. I also like to think that I am smashing stigma around this highly marginalized mental illness by living authentically and unashamed of who I am - and my alters.
My disability has also become my area of expertise in sex therapy and social work. So, as I visited my sister, I asked her some questions. Some really difficult and tough questions that frankly, I didn’t want to ask but had to to heal and let it go. A skill I have not mastered, but apparently was a learned behavior, because I wasn’t diagnosed with DID until my 20s. A diagnosis that would’ve been really helpful and crucial to be aware of in my youth as opposed to my adulthood. My sister, being only a year older, has taken on this role to be my outside protector. As a result, she doesn’t like to tell me a lot of things. I mean, who likes telling a loved one potentially traumatic shit that will more than likely upset them?
More often than not, I have to pry the information out of her. Today, she turned the tables on me; if I had my diagnosis when I was a youth what would I have done differently? With everything I know now as a clinical social worker and sex therapist, what advice would I have given to myself? I was speechless. I didn’t immediately have an answer, which is not like me at all. So, I did what anybody with anxiety and OCD does; I obsessively thought about it. The immediate and more glaring answer: I don’t know what I would have done differently. But as a social worker, what I wish I had known all those years ago? The advice I would give to any family with a person living with DID?
put down the moonshine
Seriously. What the fuck are you doing? Put it down. That’s not water. That is poison, which made you very, very drunk and encouraged a lot of really questionable decisions, like commandeering someone’s boat and capsizing it. A lot of people living with DID develop an addiction or an unhealthy dependence on a vice. Many turn to cannabis, others to more sinister and deadly vices, like in my case near pure alcohol. That shit can be used as an alternative to gas in cars. Don’t drink it.
for the love of chocolate, talk to your fucking parents
Two-thirds of them will die while you're still in your 20s, asshole. Stop being a sarcastic little bitch and just talk to them. Trust me; they were scared about your blackouts - which you thought was normal and everyone experienced; I’m here to tell you no, not the case. Only when your Inuit Mum is about three months from death will you learn that she and your Dads agonized over your safety, but like, never spoke to you about it. (Any parent with a child with DID reading this: OPEN THE LINES OF COMMUNICATION WITH YOUR CHILD!)
embrace your alters
They are there for a reason, even if not immediately apparent as to why. The more you deny it, the worse it’ll get. For me, one of my alters took over for the better part of a year and developed an addiction to Black Tar Heroin. Want to talk about traumatic? Imagine coming back into your body and being locked up in a psych ward. Yeah, it was hell. It took me years to forgive Heinrich for what he did and let it go. It took so many internal fights and some self-destructive behavior before I realized he also felt guilty about it. He also wanted to live; he felt neglected, ignored and forgotten. He wanted me to acknowledge him. And once I did that, life got a little bit easier for my family and me. So, embrace your alters, even if they are little monsters because just like you they have emotions, too. Pro-tip to parents: there will always be an alter you fucking hate and wish their presence could be exorcised from your child. But learn to tolerate and then to accept them. More often than not they (alter) are there for a reason.
your idea of boundaries will be one hardcore learning curve
Limits for yourself, your alters, and your family will continuously evolve as your mature and learn more about your system. Remember that boundaries are a two-way street; you, your alters, and your family will have to learn and respect each other’s boundaries. Parents: you will think you are doing it as a means of protection. Stop. Think. Reflect. And talk to your child. They will have a pretty good idea of what boundaries they need at that time. If that means you are staying out of their spaces (bedrooms, cellphones, and social media), you need to accept and respect it. It will be hard, but you have to do it and trust that if something were to go horrendously wrong, they would reach out for help. Hosts: do the same for your alters. Eventually, you will become one cohesive working unit, I promise.
The last thing I would tell you and myself? You are extraordinary! You have this fantastic coping mechanism that will help you navigate life. Yeah, it’ll be complicated and confusing at times. Mistakes will be made and sometimes spectacularly made. And that is okay. You will be okay.
BETHANY KILLEN - RESIDENT ADVICE COLUMNIST & SEX THERAPIST
Bethany Killen (she/her), whose time spent finding ways to navigate through her own personal struggles led her to pursue a career in social work.