The Lost Years

17 years.  Nearly half my life spent in therapy.

20 years.  Because I should have been diagnosed 3 years earlier.

10 years.  Because that’s how long I went without the right diagnosis after starting therapy.

14 years.  Of the wrong medication.

Too many years lost.

And too much pain and destruction.

I should have been diagnosed with borderline personality disorder (BPD) at age 14 – when I first became suicidal.  There were enough indications then.  It is still rare for a mental health professional to diagnose an adolescent as having BPD, but the construct is stead and holds. If treatment had started then… Research shows how crucial it is to start young.

I should have been diagnosed at 17 – when I first started therapy.  Instead the diagnoses trickled in over time.  Depression at 17.  Anxiety at 19.  PTSD at 20.  Bulimia at 20.  Diabulimia at 21.  Self harming at 24. And so on.

Suicide attempt after suicide attempt.

Constant suicidal ideation.

Panic attacks.

Hospital after hospital.

I don’t know why they couldn’t connect the dots.  I think some therapists, some clinicians had an inclination.  But they said nothing.

So I kept doing all the things I was supposed to do.

CBT.  Cognitive Behavioral Therapy.

Inpatient treatment holds.

Intensive Outpatient Programs.

DBT. Dialectic Behavioral Therapy.

So many “skills” learned.  So many “educational materials” reviewed.

So many back up plans and emergency plans.

Daily journals.

Daily logs.

Daily emotion diaries.

Rate every aspect of your life, every emotion you feel in a day 1-5.

Find the triggers.  Avoid the triggers.

10 years later, the diagnosis finally came that started to help make sense of it all.  But even then

Psychiatrists.

Med 1.  No help.

Med 2.  No help.

Med 3.  No help.

Med 4.  No help.

Med 5.  Something started to work.

Increase Med 5.  Decrease Med 5.

Med 6.  Possible to OD.  No more Med 6 or anything like Med 6.

Meds 7-14.  No help.

Med 15.  Added to Med 5. Helped.  Unfortunate side effect – blocked neuropathy so I didn’t realize I was developing neuropathy in my feet until it got bad.

Med  16.  No help.

There are no other med combinations to try.

They all tell me it’s the best they can do.

There are no FDA-approved meds for BPD.

Dozens of psychiatrists have reviewed the combination.  So many hospitals.  But that’s all they could do.

I did what I was told.  I found the therapists.  I found the psychiatrists.  I figured out the insurance.  I went to the groups.  I went to the sessions.  I read the books.  I did the homework.  I was mindful.  I did diaphragmatic breathing.  I visualized.

I spent hours and hours talking.  I spent hours on buses to get to places to talk more.  I talked in circles and kept talking.  I was “introspective” and “insightful” they said.   And I spent even more hours talking until I wanted to scream.

Why wasn’t it working?  If I was so smart, why couldn’t I find my way out of this hell?  Why were people telling me I wasn’t trying enough?  Why were people upset with me because I wasn’t getting better?

I was doing everything I was told to do.  I was working as hard as I could.

And while I was doing that, I was dealing with type 1 diabetes, celiac, hypothyroidism, a hiatal hernia with GERD, had 4 surgeries, and my physical health kept declining.

While I was doing everything they asked, I was studying to psychology and economics and political science and presenting my honors thesis.  I was coaching skating and working and running a lab.  While I was doing that I was taking care of another.  While I was doing that, I was starting law school.  While I was doing that, I graduated law school and passed the bar and started trying to be a lawyer.

Why then was I like this?  If I was so smart, why couldn’t I find my way out of this hell?  Why were people telling me I wasn’t trying enough?  Why were people upset with me because I wasn’t getting better?  Why was I getting worse?

Many said I was manipulative.  Many said I was a bad person.  Many said I deserved all the bad in my life.  Many said I was attention seeking.  Many said I didn’t want to get better so I wasn’t trying at all.

So many pejorative terms to describe me.  I believed them all.  They still have a hold in my mind – defining who I am when I can’t define myself.

I started studying.  I set Google Alerts.  I wanted any information because I needed to keep trying to find a way out of this hell.

I’ve never stopped trying.

I’ve fought harder than you can ever imagine.

What was I missing?  Why couldn’t I figure it out?

I understand the different pathways in the brain.

I understand how DBT, CBT, ACT, EMDR, all the acronyms are supposed to work.  Why aren’t they working?

More deterioration of body and mind.  More surgeries.  My worst nightmares.

Then, in the midst.  I find articles.

Schema therapy.

Attachment theory.

Things start to make sense.

2015.  I try to escape to get help.  Things get worse.

Months too late to avoid that  pain, I find a therapist by chance who takes Medicaid and Medicare patients. He does Sensorimotor Therapy.

He teaches me about this and structural dissociation.

He lends me text books that I take home and transcribe and read.  I am so sick and I start to make this my job – it is a full time job, or an endeavor worthy of a degree.  Tomes I bring to my room to study: Sensorimotor Psychology.  The Haunted Self.  A Dissociation Model of BPD.  The Polyvagal Theory.  Coping with Trauma-Related Dissociation.  Affect Regulation and Repair of the Self.

There’s more to it than that but that’s a good basic outline.   I can provide more research if needed.  I read everything.  Every Google Alert, I scour and print articles.  I email researchers for copies.  I synthesize them into a primer.   78 pages so far.  Hundreds of articles.  Theories.  Neurology.   Genomics.  Treatment protocols.  Adding up all the pieces that were missed.

Starting to know more than the “experts.”

I start to see the connections.

I’m interrupted by more trauma. We hadn’t done enough work yet.  I didn’t know enough yet.  I wasn’t able to function enough yet.  Things were too unstable around me when I was already so unstable within.

2016. I start to come back, away from the most destructive force in my life.

None of those therapies could ever have worked.  They require me to access a part of my brain at a time when it is fundamentally inaccessible.  It’s not because I’m trying hard enough.  It’s literally because no matter how hard I think, no matter how smart I am, that part of my brain is not there when I need it most.

Insecure/Disorganized attachment that coupled with repeated boundary violations distort the development of the right brain within the 1st year of life.  Boundary violations activate vagal responses to perceive environmental threats, P3a activation, dissolution.  These lead to dysfunctional neural connections, particularly in the prefrontal cortex and limbic system.  These lead to unintegrated parts. These all reinforce each other.  These all work with and against each other.  They inflame and react.  The allostatic load may have triggered the autoimmune responses.  All of this leads to complex dissociation.  This is why I can’t figure it out.  At times when I want to think, when I am falling apart inside – disintegrating for lack of a center – my dysfunctional brain and reactive processes within me thwart any attempt at doing so.

It’s not because I am manipulative or attention seeking.  Not any more than a baby is manipulative or attention seeking when it cries from hunger.

I have been trying but I had the wrong tools.  I needed a hammer to hit the nails into place but all they gave me was a wrench.  I’d done the best I could with the wrong tools.

I took a chance.  I stopped taking Med 5.   It’s complicated but I did in late spring 2016.  It’s not recommended (don’t do what I did) but I took the chance.  And it was one of the best things I’ve ever done.  Med 5 was too much.  They always wanted to give me more.  So many psychiatrists evaluating over and over and over again – saying for over a decade this was the right medicine but really never questioning it might be too much.  I needed less.  A lot less.  2/3 less (now heartily approved by physicians).  Years of being overmedicated, feeding into a brain that was already unstable.

So many years lost.

Years without help.  Years without the right diagnosis.  Years without the right therapy.  Years without the right medication.  Half of a life wasted.

Many people failed me.  People whose job it was to protect me most of all.

None of my dysfunction happened in a vacuum.  I take responsibility for what is mine – and often more than that.  But this did not happen in a vacuum.

The health system failed me.  Inflicting more trauma.  So little compassion.

More people were hurt.

More people judged me and hurt me back.

I wonder if I could have done more over the years.  Could I have found the information sooner?    But I also know I couldn’t have.  I was doing what the “experts” were telling me to do.  I was doing what I was told I was supposed to.  I was doing what they promised me would help me get better – all the therapies, all the medications, all the skills.  I did it all.

I can’t explain dissociation and structural dissociation tonight other than to say, everyone has the ability to at some level.  For some, like me, it breaks me into a thousand pieces and I am no longer me.  Even on the good days, finding myself is not easy.  But I keep trying.

Suicide was never about giving up.  It was never about not trying – though anyone would want to escape the hell that is my mind.  Suicide was always about being a burden and a failure and not wanting to fail anyone anymore.  Those who thought it was selfish or manipulative or attention seeking could not understand the complexities.  I wish they could.  Especially now.

I feel like for the first time in a very long time, I am starting to be able to breathe again.  Will it hold?  I can’t promise anything.  I can’t promise I will get any better than this or that I won’t get worse.  But I’m not where I was a year and a half ago, so completely dissociated and in pain.  I am not where I was two years ago when I was breaking in ways I did not think I could break.  I’m healthier than I’ve been in years.

Every day is a monumental struggle that most will never know.  Nor would I want them too.  The pain and the hell persist.  I just understand them a bit better now and the meds don’t make it worse.

Nightmares.  Suicidal ideation.  Self harm.  Eating disorders.  Anxiety.  Depression. Borderline Personality Disorder. PTSD.  They all still exist.  Every day.  Alongside type 1 diabetes, celiac disease, hypothyroidism, hiatal hernia with GERD, juvenile rheumatoid arthritis, asthma, endometriosis, occipital neuralgia, cervicogenic headaches, herniated discs in my cervical spine, neuropathy, retinopathy, carpal tunnel, chronic pain, insomnia, and others.  Every. Single. Day.

They will all exist until there are cures.  They are biologically based, not a moral failing.

Others will try to make me think they are a moral failing.  But I’ll persist.

Right now though, there is an immense sense of grief and even anger, knowing all those years were lost.  A mourning for what might have been – what if I’d been diagnosed younger and had the right therapy and medication when I was 14 or 17 or 19 or 27 or 32?  There’s no going back to change it for myself or explain to others.  There is advocacy to prevent it from happening to others.  But mostly there is a sadness that should not be pathologized – one that recognizes it didn’t need to be like this.

I don’t want to lose anymore.

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2 Responses to The Lost Years

  1. Jillian says:

    I am glad you are still Here. I am sorry for all you have to fight every day. I would bear witness to your story if you need a friend.

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