I think my body is trying to tell me something

I’ve had this thing going on the past few days? longer? A week? I feel like there’s something going on in the back of my brain. My brain is processing something in the background. I’ve realized only today that it might be why I’ve been hit with sudden terrible world stopping fatigue more than once. Sometimes my body is so tired it wants everything to stop. No input, no output, just stop.

I can best describe this as feeling as if my brain is trying to tell me something…. But that doesn’t seem like something anyone can understand. I think it’s related to EMDR therapy. Maybe. Probably. I don’t know. Previously I’ve felt this compulsion to sit down and write about my past but then when I sit down there are no words. So now I try again.

(CW for references to childhood trauma)

I suppose I cannot explain this clearly enough for anyone to understand. I’ve thought about my past childhood trauma from when I was a tiny helpless baby. How I learned at an early tender age to dissociate to deal with my physical and emotional pain. I’ve thought about my CPTSD diagnosis and how my multiple physical diseases are physical manifestations of my psychological diseases. I’ve thought, again, about how if I had an entirely different first five years of life I’d be an entirely different person. What if I hadn’t been neglected or sexually abused. What if adults in charge – foster families, social workers, judges – had a better understanding of the effects of trauma and stress on children? Would I be better able to love and to share my feelings? Better able to reciprocate? But I’m not – not that person, as much as I wish I could be. I’m broken, cracked. Only I can repair the damage …. but only so much damage can be repaired …. and I don’t know where to start.

I’m so tired of being different and knowing how different I am and not knowing what to do about it. 

I experienced such stress and trauma, such upheaval in the first five years of life that .y brain was irreversibly changed. My love was damaged and stunted when I was severely neglected as a small baby. I witnessed things that children should not be exposed to. Still a small child I learned that adults aren’t to be trusted and that everyone leaves eventually. Abandoned so many times I’ve come to always fear it, in the core of my being, even when the fear is thoroughly unfounded. Even my ability to adapt to new situations has been permanently hobbled as my body became consumed with survival. 

I’m so tired of all of my psychological diseases manifesting as physical diseases. So long as a child I was asked to be brave, told to be quiet, left alone by different adults – foster parents, social workers. So long growing up did I push all my feelings and fears and worries down and deep. So long I pushed everything down for fear of retaliation. So long have I worried, wished and wanted, not knowing why. 

And now? Now I don’t know what to do. What I should do. What I can do. I’m stuck doing the same pointless actions day in and day out. Wishing I could be something more and left wondering what I could have been if my early life had been different.

Talking about EMDR

I want to write a blog post about my experiences with EMDR so far but I don’t know where to start so I’m just going to talk about EMDR for a bit. My experiences are different from others since my memories are very fragmented and my flashbacks are mostly emotional and my intrusive thoughts are for more recent events. I can access very few memories of my childhood. 

EMDR therapy is weird and hard. It can also be interesting to see what thing pops up in my brain when in the middle of EMDR therapy. There’s lots of details to the process that you can find with a simple Google search. It’s harder to find information on how it will make you feel. It took awhile for my therapist to decide that I was ready to start EMDR. Based on my experience with my therapist, you don’t start EMDR until you are ready to start EMDR. I had to get better at self soothing before starting. 

I dissociate during EMDR but I’m not reliving a specific memory/event so that’s something else that is different from what other people understand – if I understand this correctly. I’ve fought through worse episodes of dissociation too. In fact it’s different because I’m not fighting my brain to stay in the present, my brain is leading. And I’ve been okay to drive home alone after.

I’ve had 3 sessions of EMDR and none of them have been severe or distressing (yet?). I’ve also (already?) started to have memories come back outside of EMDR. That part is weird an uncomfortable but since I’m better at self-soothing and my meds have helped my nightmares it hasn’t been terrible. I’ve been nervous before each session and I don’t expect that to change. However, after the last session dealing with the post EMDR brain isn’t as hard as the time before…. So that’s obviously not going to be the same every time. 

Right, post EMDR brain is hard. The day of my appointment I end up feeling like I did something strenuous – because I did. I compare it to completing a final in college – the kind that takes like an hour in class and you walk out relieved it’s over. It’s draining because your brain is doing a lot. Last time I ended up with a migraine – but that’s not guaranteed either. I’ve had to take it easy after every (full) session of EMDR. Less focus is pretty common for me. 

Overall I can say that EMDR isn’t as scary as I imagined it but it is as hard as I imagined it to be. But healing isn’t easy. 

Mental illness and the medical industry

inspirobot meme: Words say "Friendship is life itself. Life itself is friendship."

I really have no idea how to title this post, let alone start it, past picking an image from inspirobot. But here it goes —

As I learn more and more about my PTSD I realize more and more about how ignorant medical professionals and staff are (seemingly willfully at times) about mental illness. The people I expect to have some kind of awareness or understanding seem to have none. Initially I found this shocking, at this point, it’s unsurprising and tiring. I also realize experiences similar to mine – and worse – are not uncommon. I’m referring only to my personal experiences here.

Recently FB memories reminded me that in January 2014 I was basically assaulted and abused by ER staff. Part of the experience included me blacking out, I only know because my husband was present. Through my entire time there, when I was desperate to receive care when my migraines – which had just started to become severe – things continued to be handled badly. (There’s a thing known as patient’s rights – I’m not sure they respected any of them). I didn’t report any of the hospital staff’s behavior because it was too traumatic and I was too new to the going to an ER for a migraine experience. I tried to move on. I thought moving on would be better, safer, easier. It took at least 3 years to stop feeling like I was there when I remembered anything from that night. When I remember it now, it’s closer to a regular memory.

The FB post that triggered quite a few memories:

Reading the memory and posting about it triggered other memories including parts of an interaction with my previous counselor. I can remember talking about having flashbacks to being in the ER, and being confused and scared. I was questioning if they were flashbacks, questioning if it was a sign of PTSD. I was probably in some kind of crisis. She said yes, it’s post traumatic but no it’s definitely not PTSD. Denied that I had any further problems, just was having isolated problems with a difficult experience. Dismissed my emotions.

Not once, in the 4-5 years, with a visit every month on average, that I met with this woman did she ever consider that maybe she should send me to another professional, like a psychologist or psychiatrist. I have come to realize that she denied any chance of me having anything more than anxiety or depression – continually. Almost regularly. I must have started seeing her in 2012 or 2013, well before January 2014 when the shit happened in the ER. She offered me bandaids, and occasional realizations like a few sips of a cool drink, but nothing to actually help me understand my behavior.

I’ve come to learn that her behavior was at least in part, because of the stigma in the medical/healthcare industry that people with mental illness will try to collect more mental illness diagnoses. Sure, some might feel that it’s helpful to do this. I’m not judging them. But not all of us do. When I finally sought testing – an idea she resisted – after learning I might/probably/do have borderline personality disorder, she still resisted this idea and disagreed – but never elaborated on why.

So that’s four years of worsening symptoms – flashbacks, blackouts, dissociating for sometimes days, severe mood swings, and severe migraines triggered by psychological stresses – that maybe I could have had help with sooner. Because I wasn’t educated enough and because this (older) woman was so stuck in her ways of thinking, including her mental health stigmatization, I continued at many times, to not do much better than survive.

I think I have to continue to try to “move on” from all of this. Writing out this jumble might help. Since then I’ve started seeing a new counselor, further trained, and therefore prepared to help me understand my behavior. The new counselor has been a fresh and new experience. I wish that I had sought out testing and “fresh eyes” much sooner than I did but for so many reasons I didn’t. I wish I had “fired” her sooner. Sometimes I debate one more appointment with her to ask why she disagrees with my BPD and PTSD diagnoses/symptoms/presentations. But that’s a $50 question.

I think it’s also important to note that I have found it necessary to only tell some of my doctors that I was diagnosed with PTSD and Borderline Personality Disorder – because of the stigma, especially of Borderline Personality Disorder – thanks in a large part to TV.

Navigating the (American) healthcare system is difficult in general, and an especially exhausting and stressful ordeal if you are trying to get help for your mental health – assuming you can even afford to do so. Everyone’s experiences with mental illness are different, and everyone’s experiences with medical professionals are different too. Also remember, medical professionals are humans too. Unfortunately, sometimes I think some of them need reminded.

So my point. If you have mental illness and you are trying to get help, keep at it. It’s difficult and scary but worth it in the long run. It took me from July 2018 to November 2018 to finish psychological testing, get all the results, find a new counselor and find a psychiatrist. Now I have a counselor I appreciate and trust who’s warm and friendly. The psychiatrist I found (on the second try) seems to be really laid back and competent.

And if you know someone with mental illness – even if you have mental illness – offer them empathy. Educate yourself. Keep an open mind. Ask them how you can help. Don’t tell them what to do – which is hard when you see people in pain. Sadly, some people will also be in denial all their lives too – but that’s their choice because everyone has to seek care at their own pace.

Remember, you aren’t alone.