Update + another Diagnosis

I intended to update this site every week. Truth be told I needed a break from this and from Adult Survivors of Child Abuse (ASCA) meetings. I journaled for myself during this absence but I simply couldn’t put myself ‘full-hog’ into self-improvement. Going too fast is destabilizing for those of us with deep early childhood trauma. I needed to step back for self-care. I needed to step back because I had been given another diagnosis: Other Specified Dissociative Disorder-1 (OSDD-1).

To say I had a hard time with this diagnosis is an understatement. I fought it. I disbelieved. I was convinced that I subconsciously made up my symptoms, or used improper language to describe them, and misled my therapist. I went into therapy each week with a new theory about how I had an atypical (often non-existent) variant of any other disorder that meant I merely looked like I had fragments. I spent hours online hoping to find information that would somehow ‘disprove’ I had OSDD-1. But nothing stuck, and I knew Complex PTSD alone did not describe all the dissociative symptoms I experienced- symptoms which came and went. This inconsistency is not uncommon but it made wrapping my mind around everything much harder! I drew elaborate diagrams to somehow help me understand why I sometimes have symptoms and sometimes don’t. In the end I am starting to come around. The shoe fits and occasional symptom-flare ups remind me that this is real.

In many ways I have already been writing about complex PTSD as if it were OSDD-1. The idea of somehow being less integrated made sense to me even as I fought and denied it. This description is technically accurate for PTSD and OSDD-1: many people in fact would classify OSDD-1 as a type of PTSD. The difference between complex PTSD and OSDD-1 is that dissociated parts in OSDD-1 are more developed than they are in complex PTSD. OSDD-1 is considered to be like Dissociative Identity Disorder (DID) except that the full DID criteria is not met (for more information please see my links page). For example, parts might not be as distinguishable as they are in DID, and/or there may not be amnesia between parts.

I lack amnesia between parts and do not have parts that are as distinguishable as they are in DID. Unless I say what is truly on my mind, no one would notice anything different about me between parts. Until now I didn’t even notice a difference. I just thought everyone experienced the world as I did (arguing with myself, knowing I should do something and wanting to do it but not being able to, memories sometimes being clear and other times being hazy, feeling stuck…), or that I was experiencing ADHD symptoms (impulsiveness, hyper-focus, lack of focus/motivation…). My therapist weathered my denial by having me chart my dissociative symptoms. I tried ‘moving forward’ as one but it didn’t work: I need help to be able to do that. We’re supposed to start a new technique of noticing how my body feels, what behavior I want to do, what emotions I have, and what I think (in that order). It’s supposed to ground me in my body and help me address my ‘phobia of inner experience’. I am terrified. I want to run away and hide.

Which brings me to my current predicament: I have datasets and papers to work on, stuff that I should have finished a long time ago; I have emails to send, little things to do for others, an article to review, presentations and a poster to make. My laundry and cleaning situation is beyond a crisis, and I have personal email and chores I’ve neglected. Yet I cannot focus on any of it. I want to focus on it; I just feel so overwhelmed with all of it and with my inner experience that I just want to run away and hide. I think I should put concrete asks out to others to help me complete things (sometimes just having company helps me get things done) and decide to do so, but then I don’t. I don’t want to burden others with asks, say I should be self-reliant, fear I won’t get what I need if I ask for it, and don’t want to put too much on others by letting them know the depths of this disorder.

But I have energy and intent to work, to move forward, to not be stagnant, to live. I feel frustrated, not defeated. I have finally accepted the ‘big scary’ and will start addressing it directly in therapy. I am stuck but am bursting at my seems to move forward. Maybe now I can finally write again, and maybe now it’s what I need.

 

Exciting Things

It’s been a bit since I posted.  I may go back and post some of the things I texted myself during this time (I do journals from thoughts that come to me throughout the days).  But for right now I want to post about a few exciting things:

1. I visited one of the respite houses for the Georgia Mental Health Consumers Network.  This place is a gem!  They have different activities throughout the week and run on a peer support model.  I wanted to check out the place too because they have some rooms available to help prevent hospitalization, and when I start getting into my trauma work more there may come a time where I need that.
2. My dog’s emotional support animal vest came =)  This is super exciting because I really do feel so much more grounded and positive when she is with me.
3. An AMAZING coloring book I had ordered that is specifically for adult survivors of child abuse came this week.  It’s broken down into 17 chapters of healing and has lots of great suggestions and affirmations throughout.  I’ll add a link to my resources page =)

On support and asking for help

Content note: reference to suicide prevention, low self-worth, and gratitude

I really lucked out because I have had so many people saying and doing the right things to support me when I needed it.  I was terrified to ‘lift the veil.’  I don’t know where people learned to be so accepting and non-judgmental, but I am here because of it.  Here is my inventory of my support:

One of my cohort-mates knows everything that is going on for me and has shared her experiences with depression.  She gives me the space to just be with my feelings and affirms that I am competent.  This is priceless.  I would not be where I am otherwise.

My office mate also knows everything and has likewise just given me space.  Honestly she’s had to do a bit of crisis intervention with me but hasn’t made me feel put down or anything for it.  With her I was first able to say exactly how low I had gotten and describe how I rapidly ‘switched’ from that to ‘everything is OK’.  (This ‘switch’ experience eventually led to my diagnoses).

My poor roommate has patiently listened to me rant about how ‘I don’t have PTSD’ for 20 minutes each night over the course of two weeks.  She hasn’t bought it and has made it clear to me with her sarcastic “OKs”.  Enough said.

My adviser is amazing and is constantly looking out for my best interests.  She proactively suggested trying to go for a leave of absence next semester.  When I think I don’t belong in the program or am a drain on the department she has countered it.  I did not expect to open up to her so much because I did not feel it was appropriate.  Her open ended questioning and my feeling like I owed some explanation brought me there though.  Her response has been utterly non-judgmental and she has let it be known that it was OK to share.  I don’t know if faculty have been trained on how to recognize or respond to mental health issues in students, or if she inferred exactly how low I had gotten, but her response has been amazing.  Her acceptance and non-judgmentality allowed me to share more over time and honestly she’s also been doing a bit of crisis intervention with me.  She has witnessed some of my depression thinking and PTSD dissociation and I know she’s been advocating within the department for me to do a leave of absence next semester.  She’s also an amazing academic mentor and wants to keep me on as a research assistant while I take my time off.  When I contrast my experiences with her with other PhD students’ adviser experiences I can honestly say that I might not be alive right now if I had a different adviser.

My other academic mentor knows everything, tells me I’m competent, and has truly gone above and beyond to keep me connected and show her support.  It goes without saying that she has also done crisis intervention with me and that her support is helping me stay my course.  When I started going into my depression in the fall of 2014 she noticed and reached out.  At the time I felt guilty that I prompted an email inquiring about my well-being.  I did not know then that I was spiraling downward.  The email let me know though that was OK to let her see my facebook posts about my diagnoses this spring.  Her like on one of my posts let me know it was OK to reach out to her for some perspective and advice.  What I got was far more than I expected or thought I deserved.  She didn’t just give me perspective, she told me I can be a successful academic despite my diagnoses, helped me strategize, and told me that she is 100% behind me.  She even told me that she would notice if I disappeared, talked with me about building a support team, and gave me her number to call when I needed.  I still haven’t processed this.  It was hard for me to reach out because I didn’t want to be a burden on her time.  It was a combination of having to make some decisions that might affect others and her reaching out that let me message her.  I know I have to prepare a support plan and people for when I start addressing trauma memories but I am not able to do it yet.  I don’t yet know that I’m able to call her when I feel desperate or at my lowest either but I’m working to get there.

I have support from two friends who I feel like are “cut from the same cloth” as me so to speak.  Demographically we’re quite different other than being trans,* but I feel like we tend to see things the same way and have what I’ll call this resonance.  I felt the resonance was there inexplicable and strongly with one of them the day we met.  Now that I know what I know I think I understand why.  Our childhood abuse is really similar.  With my other friend I felt resonance as I got to know him.  His abuse experiences are different than mine, but we learned about our shared diagnoses at the same time.  We’re all in this trauma club together.  Being able to relate to others who share this and who are exposed to trauma because of identity is a whole other level of relatedness.

Finally I have support from therapists who ‘get it.’  I am lucky.  Everyone should have access to mental health care that is appropriate and affirms who they are.  I may not be alive right now if I didn’t have this.

On self-worth and love

On May 7^th I was back at Stone Mountain feeling flighty, antsy and anxious.  My grounding hadn’t been working as well.  When I leaned in to figure out why, I realized I was thinking about others and feeling guilty that I have access to good mental health care that others don’t.  Since many of my identities are stigmatized in society, and by mental health providers, I know that it can be hard to find good affirmative care and how lucky I am to have it.

Behind my guilt I realize there is a feeling of unworthiness:  I don’t believe that I deserve this access over others because I think others are more deserving, and I don’t feel it is enough for me to practice self love and focus on myself.  Behind my feeling of unworthiness is self-hatred.

I don’t deserve access over others, but I don’t like that often I relate to that truth through guilt, unworthiness and self-hatred.  Guilt is separate from anger, which I feel too.  Behind my anger is love, caring, and my value system (e.g., justice).  There is power in relating to the truth that I don’t deserve access over others through anger, love, caring, and my values.  I want to be in the world in a way that is motivated by love, joy and power, rather than self-hate.  I will therefore try to embrace that loving myself is powerful and necessary.

Where I am now in coming to terms with my diagnoses: Learning my triggers

I realized I have three responses to my diagnoses:

1.) I don’t have PTSD

2.) I am weak for having PTSD

3.) I have PTSD because what I experienced affects me; since it’s not in my nature to externalize and abuse others, I turned my traumas inward.

I have felt all three of these in the last week.  Since my back-up therapist suggested I observe when I feel different moods or emotional parts, I began to examine what triggers each response.  Here’s what I learned:

I’ll slip into thinking I don’t have PTSD when I have a semblance of normalcy.  The stabilization work I’ve been doing in therapy and being able to focus at work can cause this, but I think it happens when underneath I feel depressed.  At least last Monday that was the case.  I suppose I need to go deeper into understanding the depression.  For now though I realized that if I think I don’t have PTSD I am to blame for my problems.

I’ll slip into thinking I’m weak for having PTSD when I’m lonely.  I find myself thinking that I haven’t experienced significant trauma, and must somehow be flawed for having developed PTSD from what I experienced.  This judges my emotional self and is invalidating.  In part I have this response because my dad castigated emotions as weak and I was not allowed to have them.  This response might also come from wanting a sense of control, because I put the cause of my PTSD solely on myself rather than my parents.  Like my first response I say that I am to blame, which comes from self-hate and feeling unworthy.  I think this response to my diagnoses connects to loneliness because when I feel lonely I often think I’m invisible and unworthy of others’ time or attention.

When I feel the support that I have I’m able to accept that I have PTSD because I have experienced trauma that I turned inward.  This is the only response that accepts what happened and is non-judgmental.  Of course what happened to me would create PTSD because it was not right and was harmful.  When I relate to my diagnoses this way, I see that PTSD is a healthy response to what I experienced.

I will have to continue observing myself to learn more about what triggers my feelings of unworthiness or support.  The two seem opposed in that my feelings of unworthiness make it hard for me to ask for support and encourage me to isolate.  If I can figure this out before getting to the stage of treatment where I talk about my trauma experiences I’ll be in good shape.  I know I’ll have to develop an emotional support system plan for the lowest lows that may come, but right now I don’t know how to do that.

On Fragments

Is my “I don’t have PTSD/everything is ok” mode a fragment?  Is it an emotional part associated with The Image of Me?  I feel like it might be.  I mean it’s denial and The Image of Me came from denial.  Yet The Image of Me also gave me space to discover what I might be capable of.  Maybe The Image of Me would be seamless with Broken Me (the real me, my emotions) if I wasn’t abused.

An Emotional Flashback

Content note: emotional flashback, self-blame, self-harm.

Last week I got to observe an emotional flashback.  It started on Monday and lasted until Wednesday.  On Monday I did my grounding exercise but I didn’t take motherwort before a department event.  Although I knew the department event may be challenging, I was in my “I don’t have PTSD” mode beforehand.  After the event “I don’t have PTSD” morphed into “I have PTSD because I am weak”.  The morph happened with a growing sense of depression.  When I was at the event I was thinking that an appeal I recently submitted wouldn’t go thru because others wouldn’t think I’m competent.  Knowing that some of the people in the room could be judging me, and that my shit is laid bare but I have no sense of acknowledgment of what I’ve shared also played into it.  I found myself thinking that my needs are too big for my program to accommodate and not appropriate in the setting/department.  This led to invisibility too which triggered my self-blame.  [On the plus side I was able to realize that this didn’t feel like a more concrete fragment but just like an emotional flashback.]

Here is some of what I journaled during the emotional flashback:

When I get into self blame is when I start thinking about self harm.  I know I’m not where I was before when I was planning all or nothing.  Also, unlike before I recognize my internalizing and realize that grounding in the support I have helps me.  But I’m afraid to let people know what’s going on or ask for help because I don’t think I deserve it, I don’t want to intrude, and because of the stigma of mental health.  Also maybe I don’t think my asking for help would be taken seriously, and having an ask fall on deaf ears would be devastating.  I fear people would treat me with derision because they would think I’m needy of their time and am doing it to get attention like an energy vampire.  I know what I’m saying is that having human needs and making that be know is unaccepted but in my life it has been.  With my parents for sure.  But I feel that when I’ve asked for help before I haven’t gotten it or even been acknowledged.  Maybe that’s because I don’t know how to ask for help.  I guess this goes back to fear of being labeled and that awkwardness when people don’t know how to respond or feel uncomfortable by what you say.  Yeah this is something to look at and work on.

Something I Realized This Week….

I don’t have Complex PTSD because I am weak or deficient.  I have Complex PTSD because I care about justice and treating other people right, and because I give a fuck about things beyond myself.

When I was first diagnosed I heard the voice of my parents saying that they were good parents and didn’t abuse me.  Internalizing my parents’ belief led me to believe that what I experienced was not significant trauma, and that developing Complex PTSD means I’m weak (and to blame for this).  It didn’t help that my dad specifically abused us to not have or acknowledge emotions, which he saw as weakness.

While my parents had abusive childhoods themselves we differ in that they responded to their abuse by externalizing and abusing others.  When they abused me they were trying to make me do the same.  It is not in my nature to be mean and abusive to others though, so I internalized their mistreatment of me.  I get this now.

I have Complex PTSD not because I am weak, but because I refused to compromise my basic nature.

Productive Day- Thursday 5/12/16

I got to write a thank you note to my adviser today.  She is helping me try to arrange a leave of absence next semester and been incredibly supportive.  I said how it meant a lot to me that she trusted and believed in me when I questioned myself.  Getting to acknowledge that others do trust and believe in me when I’m struggling with worthlessness is priceless.  That acknowledgement motivated me and I had a very productive day.  I got lots of to-do list items done 😉  In turn this helped me see how I have been affected by depression and Complex PTSD.  I could see how different my depressed and PTSD-triggered self is from how I have been when my symptoms are less.  This gave me context and perspective for what might be on the other side of addressing trauma.  It also gave me more access to my (righteous) anger over my experiences.  Besides seeing how different my depressed and PTSD-triggered self is from how I have been when my symptoms are less, I could also see how my symptoms never really went away when they were less.  I have to lean into that more, but I think it can help me recognize and understand what patterns I’ll have to work to transform.  I began to feel hopeful again.

Complex PTSD

I found this site that describes what it is like to experience Complex PTSD in a way that makes so much sense: http://www.crazyherbalist.com/#/teachings-trauma/