Interviews

What It’s Like To Live With Dissociative Identity Disorder

With television shows like United States Of Tara and movies like Split, dissociative identity disorder has gotten some mainstream media attention, but how much of it is accurate? We had the chance to talk with Makayla about her experience and how she manages her day to day life. Read on to learn more.

 

Tell us a little bit about yourself.
Our legal name is MaKayla, no one identifies with that name anymore- we will answer to the name of whoever is fronting, Izzy, or System.  The body is 31 years old and the rest of us vary in ages from infancy to 49.  Personally, over the years we have cut ties with all of our abusers.  We have led several different lives without one cohesive story until we started recovering.  Every 2 years, another drastic change in life – job, location, friends, hobbies and often names.

To illustrate what we mean, here’s a snippet about our accomplishments and jobs – We have published a book under a pen-name and we hold various degrees and certifications.  Throughout our life when alters would take over for a period of time they would do their own thing.  3 times Lydia chose to quit our job and be a fitness coach, a cosmetology apprentice, and an adult entertainer – while Emmie worked to get Six Sigma and Hospital administrator credentials.  To further complicate things, Isabelle has earned a nursing license and a pharmacy technician certification. Needless to say, it was a confusing life.

By overcoming those challenges every day, we earned the opportunities to create multiple streams of income for ourselves. We are forever grateful to be able to maintain a schedule that works day to day with our challenges. We have spent most of our time in recovery learning to work together and get through triggers to maintain a positive perception of our life.

Today, Isabelle cares for basic needs of the body and sets up environments both mentally and physically to help alters switch in and accomplish what they need to do that day.  We base who fronts on which parts have the needed facilities to complete the task.  Sometimes this requires several of us are around to help – and we are still working on mastering things like planned co-consciousness and continuous consciousness.

For people who aren’t familiar with the term dissociative identity disorder, it was previously named multiple personality disorder. The name was changed in 1994 to reflect a better understanding of its characteristics. As someone who lives with DID, how would you describe/explain what it’s like? 
Just like the trauma the patient endured, the symptoms and experience of DID vary for every system.  Most of our life feels like a dream or simulation.  Nothing ever really has felt real.  Often we find ourselves watching the body in third person, “like the ghost of Christmas past,” says Gage. We had always lived this way and had no memory of a life that felt real at all, so to us, that was normal.  We were used to the voices, thoughts that didn’t match actions and our daydream like life so those parts are difficult but kind of normal for us.

The hardest part for us is the time loss.  We didn’t fully understand how much it was happening until about 3 years ago, although we have had some knowledge of weird time gaps for about 15 years.  It’s hard to remember things like personal information without the help of our controller part or our partner. We usually can not recall the events from the last hour without help from another part.  We have trouble remembering our zip code, our address, and how we got to where we are.  It’s difficult when you leave a meeting and don’t remember half of it or you start a movie and then the next thing you know the credits are on and you remember nothing.

And the most frustrating thing about living with dissociative identity disorder is how much longer it takes to do literally everything. Not only does it take a long time for all the parts to decide what action to take, we typically have to triple check that we did it because we don’t remember doing it.

A perfect example of this is sending an email – Emmie loves sending proactive emails and Lydia thinks that’s “babying” clients.  The decision on whether or not an email needs to be sent takes a compromise and discussion between the two.  If we decide to send an email – Emmie will write it, Lydia will critique it and change some things that “compromise our boundaries.”  Emmie will then change it back but a little less across the line Lydia was complaining about – this keeps going until they both are relaxed enough that Isabelle can blend in to take over.

That’s when Isabelle will proofread the email and then hit send. Hitting send immediately triggers Ashleigh to the front – embarrassed and ashamed that we sent the email at all. With Ashleigh, ALWAYS comes Damien and visions of how us sending that email could result in our death.  After Isabelle unblends from Ashleigh and Damien, then Emmie comes back with strong impulses to check the email sent folder to see if the email got sent while Isabelle frantically checks the clock to see how much time we lost simply sending an email.

But it isn’t always like that. Sometimes we can hear everyone talking and sharing opinions inside and sometimes there are no alters or voices for days.  It’s subjective, not always predictable and often debilitating.

How long were you living with DID before you knew the term for it, and what was that like?
Since DID can only be formed during childhood, we’ve lived with dissociative identity disorder for our whole life.  Isabelle was aware of Lydia starting at age 17, when we first went to college.  We were misdiagnosed by numerous health professionals over the next decade and  was finally able to call this what it was in early 2018 when we found a therapist that worked with DID patients.

As far as symptoms, we’ve had them our whole life.  It’s very easy to look back on our childhood now that we know what this is and identify the signs – but no one saw them then.  It’s common for these to symptoms to be covert and not easy to pinpoint until systems are out of the traumatic environment.  It’s also common for systems to know they hear the voices but to think they are normal and that’s what we thought.

As a kid, we talked in 3rd person since elementary school.  We spent a ton of time “daydreaming” and we frequently “pretended” we were someone else, not in a like a play way either.  Later we discovered, these differences seem to correlate to specific caregivers from childhood.

Very early on, we talked in funny accents and we knew that we talked ourself through every action, almost like giving instructions. Eventually we stopped saying it loud, but the voice was always a funny accent. We often did this in a funny accent which we now know as Julia. Isabelle recalls Julia teaching her how to make a bowl of cereal before body age 4.

We’ve always done this thing we called “scanning files” but it was really us searching internally for the memory, knowledge or part that we needed for the situation – we didn’t know it was Jordan giving us information at the time. We also had what was labeled as “photographic memory” as a kid, which we now know is not that.  We discovered that wasn’t the case when someone told us that seeing a teleprompter screen that tells them what happened and shows them the moment isn’t “normal”

And lastly – we always “compartmentalized” in our life. People were always commenting on how we never were bothered by anything.  We always told them “that’s because we put that into the box in our brain that it belongs in.”

When college came and we were living without abusers – the symptoms really became noticeable.  There were countless times that Isabelle Isabelle woke up in strange dorm rooms with boys on Lydia knew. She would find herself in the dark, outside, smoking cigarettes (and she didn’t smoke. About a decade ago, I “woke back up in the body” after being gone for about 6 months to a repossessed car, no job and homelessness because Lydia stopped going to work and she and Gage didn’t pay any bills.

About 2 years ago, Izzy and Lydia took over and moved us across the country.  Isabelle woke up in a different state, a different house and no real memory of getting there.  For us – on a good day, we still spend about 65% of our time in a dissociated state.  We don’t choose this, it’s just that we have many triggers that are every day occurrences.  It’s hard to function this way but using the right tools we manage to keep it together and run a business to produce our income.

Terminology wise, two main terms are brought to mind when talking about DID: alters and system. Can you tell us about the difference between the two? 
Alters make up the system.  The term “alter” refers to a specific identity or personality inside the system.  The word has some negative connotations due to stigma so some systems use a different name to describe their alters. We mostly use the alter’s name or the word “part.” Alters are each part of our WHOLE sense of self.

The term “system” is used to describe the collective, all of the alters as a cohesive whole self.  System is the term we use interchangeably with “self.”  Not every system has DID.  We personally consider all people with dissociative disorders that have parts, as a system.  These can be OSDD, DID, PTSD, C-PTSD, BPD and other dissociative disorders.

How would you describe your own system and what is the process like to get everyone to cooperate? 
We have 64 identities.  We do not have contact with them all and not all of them front (or control the body) with consistency.  We have a core group of parts that run the show mostly and others come out when help is needed.  We are a polyfragmented system which means that our alters have alters.  It should be said that the “roles” each part takes in each system vary per system and there is no “standard.”  The descriptions below are for the parts that give a good picture of our daily struggles.

Isabelle is our “going on with normal life part.” 
Her duties for us are mainly taking care of the body and making sure the day runs smoothly for the whole system.  In addition to managing the body and the system, she is the “in between” part and the part that all parts can blend with.  Most of her time is spent preparing for another alter to front or attempting to be present while another alter is fronting. Physically, she makes sure we eat, bathe, brush our teeth and that all the admin tasks of our business are complete.  After Matilda integrated with her, Isabelle gained the reading and writing abilities Matilda had from childhood – and now she does much of the writing work we do for clients day to day. This makes her almost entirely responsible for basic day to day survival.

Lydia is a fight part
She fearlessly stands up for us and everyone we care about.  She is ranty, bisexual, 21 and filled with rage. She holds our anger and is also our hypervigilant part.  She’s loud and confrontational if she sees or feels any act of injustice.  She’s also very charming, the life of the party and hypersexual. She writes poetry, reads historical fiction and loves to exercise. Thru recovery she has learned to communicate in a different way and use her anger to maintain appropriate boundaries and cut ties with toxic people. Now she fronts and uses her strengths to hold boundaries, help recognize abuse, sexual activity, maintaining friendships and putting people on notice.

Emmie is an attach part
On a quest to find and keep people around her, Emmie will do anything to feel like someone believes in her and what she says.  Often described as “needy” when Lydia is throwing shade, Emmie is concerned about what everyone else thinks and how our actions will impact how long they will be around.  Mostly concerned about what we “should” do to fit in and get approval, Emmie is an overachiever.  Now she comes up with our to-do list and work calendar.  Great at building relationships and a business, her planning and ideas formed our ability to monetarily take care of ourselves. She’s extremely likeable and great at making people feel welcome, so she handles our client calls and communications.

Gage
He’s Lydia’s freeze part and brother, Gage is responsible for resting and protecting Lydia from herself.  Self proclaimed “Chill Master,” when fully fronting he can be found drawing, saying “dude,” or eating food. He’s a quiet loner that loves to sketch and in the headspace he’s a comedian.  He often calms everyone down with his jokes about our life.  For a long time, no one but Lydia could hear Gage, but recently he took initiative and is now more part of the day to day life.

Claire
She’s Lydia’s flight part.  Recently she resurfaced from a 10 year dormancy to help Lydia when she lost her cool.  Claire took over the work Lydia was responsible for doing.  Our urgent need to research, take notes and draw diagrams became so intense we would lose whole days to Claire studying. We chose to see that as a strength and help integrate her presence into our daily life..  Now, Claire researches and helps Emmie with planning blog topics, IG lives and infographics for Gage to draw.

Izzy
She is who we are working toward being. Often called the “higher self part,” Izzy is aware of all the trauma and has healed from it.  When she fronts she maintains and unshakable level of dual awareness.  She has access to every part expect Jordan and can willingly tap into them at any time while fronting.  Calm and constantly in wise mind, Izzy lives life based on compassion and  mindfulness.

Ashleigh
An 11 year old submit part, Ashleigh is consistently ashamed of being alive and everything we have to do in order to stay that way. She is triggered by having a need and asking for help.  Almost all parts trigger her because she always feels like what we did or said may have made someone else feel uncomfortable.  She lives in the black space, but right by the front.  She has taken care of Damien since she found him when she got to the abandoned schoolhouse he lived at.

Damien
Damien is a freeze part who appears to be toddler no more than 3 years old.  He has only ever been seen holding hands with Ashleigh. As a mute alter, he communicates in images and only when Ashleigh blends in. His influence is always a series of vivid images of the activity we are completing resulting in death. For example – if Damien is around something like riding in the car turns into seeing several flashes of head-on conclusions, careening off a steep road and gunshots coming through the back window.  Ashleigh has been seen calming him down by repeatedly counting to 7 and rocking him.  Evidence he influencing the part who’s fronting is intense pulling on the left pointer finger to stim until we unblend.

Jordan
Appearing in the headspace as the 3 year old version of the body – Jordan isn’t actually human.  Her brain is like a computer.  She operates as our controller and our gatekeeper, which means she controls who fronts when and who knows what.  Never moving, her thoughts and reminders display on a computer screen in the fronting room but she sits on a bench with her legs robotically dangling.  That bench guards the entrance to the black space. Her influence includes fear of being found or being seen and playing dead or hiding in the bathroom, closet, and behind or under furniture.  She very rarely fronts fully but when she controls the body she speaks in basic words only, while rocking and with darting eyes.  For example – she will ask for water by repeating the word “drink.”

Julia
A 49 year old lifetime Nanny with a Mary Poppins like feel. She has been with the system since body age 3.  Operating mostly internal, she is always influencing whoever is fronting and offering a “better” way to do it while she tends to the littles in a very “hands off way” inside. The adoptive and estranged mother of Lydia and Gage, Julia tries to teach everyone the proper way to act.  That includes how to clean and organize.  When she fronts she is always running around complaining about all there is to do and cleaning.

Jennie
A fun loving innocent and curious 4 year old girl.  Left behind by her brothers and her parents, she’s happy to be around all of us and says “it’s just more big peoples to love.”  She is filled with joy and almost always pops out for surprises and excitement.  She warms all of our hearts and we will do anything to protect her. We let her play and freely come out – for example – Jennie always rushes to the self check-out to “do the beep beep.”

What do you feel are the biggest myths or misunderstandings about dissociative identity disorder? 
I think there are 3 core myths that surround DID.  There are thousands of myths – but I feel like they all stem back to the same 3 thoughts.  First, is that it doesn’t exist – which is the same as saying people who have it are faking or seeking attention. Sadly, some medical professionals still operate on this dated school of thought, in spite of evidence.  We’ve worked really hard to understand why people would even want to deny someone’s disorder – and we have decided to believe it’s because no one wants to admit that child abuse happens to this many kids nor do they want to admit that sexual violence against children is common.

The second myth I think most myths stem from is that alters in DID systems are dangerous or violent.  While no one can speak for everyone – I can clearly say that most doctors who treat it and most people who have it will tell you that the only person they are a danger to is themselves.  Hollywood and other consumable entertainment have long used this disorder as their plot twist and as a result systems face the stigma of those widespread misrepresentations. In our experience, we would say that about 98% of people we tell about our disorder immediately says, “none of you are going to kill me are you?”

The third thing is a myth that is not exclusive to DID.  This is a myth about mental illness in general. The myth is that what happened to someone isn’t “bad enough to cause a disorder.”  Often systems are expected to justify that what they went through that was enough to cause DID.  It’s not just people in comments sections and on the internet, but it’s also medical professionals and for many of us – our own family members, friends and abusers.  This myth is harmful to anyone with any mental illness.

Trauma is trauma is trauma.  Whether you endured repeated childhood sexual assault, the pressure from parents or society to be their version of “perfect” or inconsistent parenting – it is bad enough to make you feel that way, bad enough to make you act that way and bad enough to cause a mental illness.

Do you have any last bit of advice for anyone who is living with DID or might’ve just been diagnosed?  
First know that you are no less than when you thought you were “one personality” and you are not alone.  It’s ok that you have DID (or any disorder).  It’s ok you are fragmented and it’s ok if you are scared. It’s ok you have trauma you don’t remember and it’s ok that your life feels not real.  It helped you survive.

Embrace your parts.  Each of these parts was created for survival and you’re alive because of your parts.  While not all of them have the best ideas, thought patterns or coping skills – they have a strength, an essential thing the system needs to function.  Even dormant parts may still have a purpose later in life.

Be compassionate to yourself and your parts. Befriend them and look for the reasons you need and love them – not the reasons they are wrong or should be suppressed/disowned.  See each part, even your inner critic, as helpful, and needed.  Reframe each communication from them as a sign that one of your needs is not being met.  Look for their strengths and work with them to help them learn better ways to use their strength to help the system function in a way more suited for life now, not life from the past.

And finally but most importantly- you don’t have to process trauma to heal past it.

Where can people follow you on social media? 
Instagram: @ourdissociatedlife 
YouTube Channel: Our Dissociated Life
Website: www.ourdissociatedlife.com

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