It's Time To Talk...Stigma

While it may be my goal to write this blog and begin to talk about my experiences living with Dissociative Identity Disorder, I am in many ways very invisible.  There are many who have read this blog over the last few years who know who I am.  Yet, at the same time there will be many who don't know me. I contemplated beginning a new blog where, I can express my views and be honest about my life, my difficulties, my experiences....safe in knowing that no one would know who I was. I have decided it is high time I begin to talk.

This week I have been thinking about why I chose in most circumstances not to discuss my diagnosis. I realized that my fears surrounding the stigma of mental illness really do impact my everyday life.  It is time to talk.

I guess to the outside world looking in I may seem very normal...whatever that might be.   I do not carry a label saying I have mental health issues. However, many who know me know that I do.  I do not carry a label that says "I have D.I.D.".

Obviously, when I meet people for the first time, I tend to skip over the fact that I have DID, and the fact that I have been hospitalized for severe depression and suicidal ideation. I do not lie. I just do not expand on certain issues.  I have a crap load of medical professionals in my life currently. Unless asked, I do not bring this up. Again, I will not lie. However, I do not expand. It is my expectation that they will ask.

My birth father is deceased.  My mother and step-father are still alive.  I do not ever say I was a victim of child sexual abuse and that one of my parents did the best she could and the other was the abuser.  I will tell you that my abuser ended his life a few years ago.  A few years to late....

The fear of rejection is fairly huge. I chose to limit what I tell people, even if I have known someone a long time I am often not upfront and open.  Why?  Truth be told I would like you to judge me as a person and not a label.  To see me as an equal who can contribute to society and can make a difference to this world that I live in.  I want you to see me as a wife and mother of two beautiful, well adjusted and smart teenagers and a wife.  So I try and seamlessly interact with society, despite everything I work at me fitting in to a world that at times is extremely frightening, triggering and scary.

It isn't easy for someone with DID to live in this world and appear normal.  I often switch between parts, my voice changes, my facial expressions change, my mannerisms change.  For many years I have tried very hard to try and plan and prepare for everything just to look normal, you see just being out there and being adult....it takes a huge toll on me...on anyone with DID.

I find it extremely hard to justify why I am so forgetful.  Why am I loosing track of a conversation half way through?  Why I have to keep time in my schedule free...just so I can either rest and recover.  Yet the reality is people don't recognize instantly that I have DID.  They do not realize when we have switched between parts/alters unless of course we react in a very clear physical way or the change is very drastic, they will just assume I am forgetful or pre-occupied with something else.

My husband, best friend (who lives 5 states away) and therapist...they know me well enough to know that these memory lapses are because of DID.  Only my therapist can tell instantly when there has been a change. My bff when we are together is also able to tell instantly.  My husband...he is learning and slowly figuring it out.  Often, my husband is able to prompt me during discussions because he knows where the forgetfulness is coming from.  He attends 99% of all doctor appts with me because of this very reason.

Society views mental health with scepticism.  The statistic that 1 in 4 people will struggle with some sort of mental health related issue....society tells us that it won't happen to us.  Indeed, with the 1 in 4 statistic, you know a minimum of 1 person who struggles with mental health issues.

Fear and stigma surround us.  There are tv programs about mental health, however it is often more for entertainment and just creates more stigma in my opinion.

People do not generally know anything about D.I.D, it is not the most talked about issue.  There is VERY Little coverage in the media about dissociative disorders.  Why? Because the underlying issue is trauma. Media doesn't want to talk about trauma.

Being victim of child abuse and young adult who was victim of abuse leaves a stigma that goes above and beyond mental health.  As a young adult, I was told it was my fault. I tend to hid the shame and the guilt I carry and have carried since being a very young child.  As a very young child I was told I was bad.  The harsh reality is of course I was a child/young adult, who was hurt.  Who suffered at the hands of adults and and employer who should have protected me or at the very least not hurt me.

Ultimately, I tend not to tell people about having a diagnosis of D.I.D because I am ashamed, not of the diagnosis or my parts but of what has happened to me.  I carry an extreme amount of shame that belongs to someone else. My abusers. One who is dead. One who is not.  This is my own self created stigma, I know.

Admitting that I have D.I.D means I am admitting not just to them but to myself, that what happened to me is a reality and as much as I sometimes wish I could, I can't deny my past.  I cant wash it away. I somehow need to embrace it. I need to someone how take up the mantel of rebuilding a life out of my past.

I want to live with this diagnosis and all of its difficulties and challenges. I want to not be a victim but a survivor. I do not want to be a statistic of someone who had a mental illness that is not commonly recognized and went misdiagnosed for 15 years while seeking mental health treatment.

My personal challenge in the coming weeks and months is to start dealing with the stigma. If people stop talking to me, judge me or ignore me. So be it. That is their problem not mine.

I am who I am.

I am the 1 in 4.

It is about damn time I begin talking....

Sunday Evening Random Ramblings...

I'm here.  Surviving.  Busy. There's good. There's bad.  There's really good. And then there's really bad. It is an never ending up and down battle.

There is good in many things.  My children are growing. Thriving. And seem to have adjusted well to school.  We've got some personal issues with one of my children that has triggered some pretty crappy things w/in my own trauma history.  My youngest did not come home from school every day the first week begging to be home schooled.  He was super excited that one of his buddies from church, who has been home schooled until this grade, was in everyone of his classes.  They sit together or w/in a few seats in every class.  It was a great start to what was highly dreaded.

This was the first time in many years, okay ever, that I didn't want to send my kids back to school.  I've been off work since the beginning of February. I had surgery again right before school ended.  We had some pretty sweet moments this summer.  I loved having them home and I miss them after 4 day being back at school.

Twin Falls, Idaho
Day 8 of 15

We took a 15 day, 5000 mile, to many states to count, cross country road trip.  We visited my grandparents, my birth father's family, and then went to Utah and stayed w/my BFF for a night, spent the day w/her family on the weekend, and stayed w/my in laws.  We were ready to pull into our driveway after 15 days of being gone.  It was a wonderful trip and we made some good memories.

My children were not thrilled about riding in the car.  They wanted to fly. We've never done anything like this.  Our furthest road trip was about 5-6 hr drive.  Having the 1st leg of our trip be 28 hrs of driving was a bit scary.  We made it fun and stopped in a few different places along the way to stretch and do some sight seeing.  My 15 yr old is a budding photographer and kept her camera in her lap/near by the entire trip.

Today, there was a comment to something posted on my facebook blog page.  The first sentence was a kick in the gut.  "Think more positive."  Sure. Yep. I know I need to be more positive.  The remaining part of the message didn't come across well, either.  My gut tells me it was all in support and love. However, that is not what I heard.  The timing wasn't the best.

I've been at a fairly low place.  Therapy is hard.  It is *insert several curse words* hard.  The more intense it gets the more alone I feel. Yet, I know I am not. Truthfully,  I haven't felt this alone since sitting in hospital a week before the court hearing to disrupt our adoption. It's the kind of alone that makes me think...nobody gets it.  My therapist doesn't. My husband doesn't. My bff doesn't. My family doesn't.  During that time in the hospital, I had a visitor who happened to be the Relief Society President.  Her and I go way way back.   Sitting with another friend in church today, who I know 'gets mental illness' on a very personal level, I was reminded of the same message that my relief society president shared with me several years ago.  The Lord put the same message in my head today as he did that day.  And it brought me to tears.

Fear not! I am with thee.
Oh, be not dismayed.
For I am thy God.
And will still give thee aid!
I'll strengthen thee,
Help thee
And cause thee to stand.
Upheld by my righteous, omnipotent hand.

I know that I am loved. I know that I am not alone. I know these things.  However, it is so very hard to remember in the depths of hell.

TMS Update ~ Mental Illness Sucks

I've ended TMS Therapy.  I finished 2 weeks ago with 61 treatments.  Not the suggested and usual 25-35 treatments.

61 Treatments. (update: the report I received today said 48 treatments.  I'm pretty sure it was 61.  I counted 61 day on my calendar.  And that was what the therapist said on the last day.)

I lost track on how many of those treatments were dual for anxiety and depression.  AKA: Both sides.

Nearly 11 weeks of going every single day.  There were a few weeks of 4 days.  And when tapering began it was over the course of 3-4 weeks.  

I wish I could sit here and write how much better life is.  How much better controlled depression, anxiety, and mental illness is in my life.  Reality is...I can't.  That hurts my heart more than you can even begin to imagine.  I gave it my all.  Every single day.  I didn't cancel or miss appointments.  

If I'm anything, I am brutally honest.  And this blog has never been anything but that.  I've pretty much told those who don't like that where the door is.  You won't find rainbows and unicorns shooting out my ass.  

That being said....TMS isn't all it is talked into being.  It isn't this one day you wake up and "oh my freaking word the cloud was gone..."  No it wasn't like that.  It hasn't been like that.  Yet, every testimonial I've read has pretty much been JUST THAT.  Because those people...the ones who are so much better after 3-4 weeks of treatment...those people...they shoot rainbows out their ass.  They eat unicorn poop cookies for lunch.  And while I'm extremely happy for them.  I want to trip them.  I really do.  Because they gave me false hope.  Almost every single day I sat down in that chair I had high hopes.  Really high hopes.  

Slow and steady wins the race.  I know that.  I also know that I've hit a block.  A really big block.  It isn't going anywhere anytime soon.  Despite my attempts to barge over it, under it, through it, or around it.  It's there.  The elephant in the room.  

The hope has slowly faded over the last 2 weeks.  The reality that this...this life that I'm living...although a smidge better than it was....it is still pretty damn horrible.  There is no amount positive thinking, reiki, tapping, prayer, faith, you name it....none that will change that. 

Mental illness sucks. 

Trauma sucks.

And I'm tired of fighting it.  Fighting the thought that 'it will get better'.
Tired of buying into the thought that 'it will get better'.

I'm not very positive today.  You could probably say I"m never positive.  And honestly, I don't care.  I got out of bed yesterday to go to a massage.  And came back home.  Went back to bed.  I'm writing this from my bed. I'm not working right now.  Which it gives for more reason to not get up.

In the last 24 hours depression has hit hard.  Honestly, it has been long standing.  Yet, the last 24-48 hours has hit hard.  

I hope my next post can be a bit brighter.  Until then...this is what I've got.

Hope on the Horizon - TMS - Week 5

I've not updated the last few weeks on how things have been going with TMS because I've not had in me.  Quite honestly, there have been some really tough moments.  Really tough days.

There have been days where I wonder if it is worth it.  I keep telling myself it will be worth it at the end of the day.  IS THERE REALLY any HOPE on the HORIZON????  Many nights it doesn't seem like it.

On Thursday, I met with the psychiatrist and she did the MT for the rTMS - which is on the right side of the brain and will treat for anxiety.  The Beck Depression and Anxiety questionnaires have shown off the charts anxiety and depression.  The Beck Depression is gradually getting better.  Still in the 'severe' range.  However, not off the charts type of range.  Yesterday was the first day for me to receive the rTMS.  It was triggering.  It was downright horrible. I tolerated it because...I feel I need to.  Because I want to find the hope on the horizon!! And so regardless of how horrible I might have felt it was.  Regardless, of if it seemed like Chinese water torture.

The MT on both sides is pretty high.  The computer/coils/machine gets hot.  My head gets hot.  My brain gets hot.  Sitting in the chair for nearly 1.5-2 hours gets uncomfortable.  It is what it is. And I will push through it till the end.  I do believe the end is in sight. I hope so anyway.

 I've had VERY few people in my day-to-day life tell me they have noticed any sort of difference. When  asked my husband will tell you no.  Early last week Jodi (therapist) mentioned she could tell a difference.  We discussed her observations.  I don't have to believe her. But I can keep the things she has said to me in the back of my head to reflect on.  And days like today...maybe I believe her a little bit.

I've had a couple friends that live distantly tell me they can/have seen a difference in photos that I've posted of myself, they have noticed it in my voice while talking on the phone, and just in overall conversations.  

Earlier in the week a receptionist that I see at my chiropractor office several times a week told me "G*, you just don't sound like your chipper self.  Even in the roughest moments...you come in here with a smile and are always so pleasant.  The last few weeks you seem to be really struggling.  Are you okay?"  She is aware of TMS and had asked me if I noticed a difference or was feeling better.  I ALWAYS schedule appts w/my chiropractor AFTER my TMS appts bc of the toll it takes on my neck and lower back sitting in the chair.  She is seeing me after being triggered (TMS has been triggering trauma crap), after discussing this aspect with her she was able to see the connection and got it.

A few different times over the last 2 weeks I've caught myself thinking "hey..." and then am smacked with the learned behaviors, the belief that I can't get better, and overall mental illness crap.  And I fall back into the cycle of self destruct, self injury, and self sabotage behaviors.  

And then today happened.

And then today not only happened....but it REALLY was okay.

A few differences that I've noticed TODAY:

**2 nights in a row...I slept more than 3-4 hours.

**Last night I fell asleep HARD and when I say hard I mean HARD.  There is some not so positive aspects of that happening in relation to self harm/soothing stuff.  However, I wasn't rattled by it like it usually does.  Sure I was rattled. Sure the physical pain from biting yourself, leaving marks, and having your husband really have to intervene...suck.  It didn't cause a domino effect where I ended up swirling.  Self injury for me usually starts small and spirals to bigger and more out of control issues. That did not happen.  Instead, I dealt with the backlash.  

**Instead of coming home from a morning at the Farmer's Market and Chiropractor and going to bed "to take a nap...."  I ate lunch w/my family.  Did the dishes.  Swept all of the floors.  De-furminated our dog.  Planted a perennial flower that has been sitting in the pot for a week.  Prepared part of Sunday's dinner (Crockpot Lasagna).  Took the dogs for a walk. And did several other things.  I have not one time...laid down in bed to take a nap...OR...sat on the couch and checked out on my computer.  

**Actually, today is the first time I've turned my computer on in over a month and didn't sit down for more than 30 minutes and end up checking out for hours on end.  Instead I've limited my time to doing only productive things (for the most part).

*I've not sat waiting for the other shoe to drop.  You know when you notice the good...and then wonder when the bad will creep in.  That hasn't been my mindset.  Instead it has been the opposite.  As little bits of negative and darkness creep in...I've countered it back.  With a big F to the U to the C to the K to the Y to the O to the U...you are not stealing this day from me.

There has been only a few minor self harm/self sabatoge thoughts that have come/went.

There have been no suicidal ideation --- which hasn't happened in several weeks/months!

I believe I have 2 more weeks left.  Instead of 4-6 weeks of treatment we are looking at 7-8 weeks.  If I understand correctly it is because the MT is unable to be at the 120% bc it is so high.  I'm not 100% certain.