I am a survivor

I am the sum of all my parts. Even the broken bits and the parts I don’t like. The cracks are proof that I’m still alive.

People tell people with chronic illnesses to not let their illness define their identity. People say are you sure you want that ‘label’ in relation to being diagnosed with mental illness(es).

Well. Chronic illness makes you feel all kinds of things. I’ve come to believe that people without chronic illnesses don’t understand how it’s part of your identity and always will be. Every time I leave the house I have to account for a list of things a ‘normal and healthy’ person doesn’t. That’s part of who I am.

The same goes for mental illness. I was diagnosed with anxiety and depression over a decade again. In the past 5(?) years I started to wonder that there was something else. There were other things about my brain that made life hard to cope with, and they weren’t anxiety or depression. There’s been so many times I felt broken. Because I couldn’t remember something (from yesterday, this morning, or three years ago) or confused because I forgot where I was going when I was halfway there. I often feel disconnected – from everything – including myself. My therapist at the time dismissed these concerns. More than once. Hindsight says why didn’t I go elsewhere? But logically, I know it’s because I was too busy trying not to drown. (Now I know what a shitty therapist is like.)

Before now I was scared to learn more about my traumatic first five years of life and how that trauma effects me as an adult. Neglect and abandonment are just the traumas I know of for sure. In fact I have focused on my physical health until the last year or so. I wanted to be “normal” so I could go back to work. In that time my mental health suffered more. Probably. And I’ve survived too much stuff to be “normal” – but that’s the thing. I was strong enough to survive.

Last year I was diagnosed with borderline personality disorder and PTSD. (It’s probably cPTSD but I haven’t remembered to ask my doctor.) So I have more labels. But the labels are important because now I can get the treatment I need.

Now I understand much about the effects of trauma on the body, how these effects stick around, and what I can do to heal. I’m working on it and I still feel broken but now more importantly I realize I’m a survivor. Understanding trauma has given me some answers but theres so answers I’ll never have.

I’m broken and sometimes I feel like a mess but I’m still whole. I’m sick but that doesn’t make me less. I’m strong and I’ve always been stronger than I realize. I’m a survivor.

…. This post has sat as a draft for a long time. I’ve edited it a few times. I’m not sure the point, but I still feel I should publish it instead of deleting it.

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.

Why I Hate Breaking in New Doctors

A memory is a winning strategy. Like human sacrifice.I could title this all kinds of different things, like Why the US Healthcare System Fails People with Chronic Illness, or Please Will More Doctors be Honest with their Patients. Or something about how chronic illnesses and mental illnesses together make doctors afraid of you.

I saw a new psychiatrist today. I haven’t seen a psychiatrist in over a decade, partly because of all the other doctors I see or have seen. I mention that because I’ve gone through what feels like a thousand new patient appointments with new doctors. Lately they all go pretty much the same. If I’m lucky they’ll have a tidbit of insight or confirm something and agree with someone else. I’ve had good and bad experiences with new doctors. You can feel anywhere from validated to broken.

It’s probably worth noting that when I fill out the paperwork that doctors request their new patients fill out, I include my own lists for my medication, health history (or diagnoses), and allergies. The preferred (better) response to this is appreciate for the clear and thorough information. The not preferred response is shock and awe.

As you probably guessed, the doctor I saw today was shocked and in awe. Her eyes widened at least three times. She couldn’t believe my list of allergies or medicines, and stumbled over my medical history. I think her jaw dropped once? More than once she asked a question that would be answered by reading 6 to 10 more words of the paperwork she was already reading. She picked out the medicine she doesn’t prescribe because it’s “very old” as well as commenting how I’m on “so many” sedating medications. (I don’t think she read the word “as needed”.) She commented on my xanax prescription, probably because she doesn’t prescribe it, but offered no alternatives.

All of this happened while she was firing questions at me. She moved quickly but didn’t specifically rush me. She was very nice but also clearly overwhelmed. She was even surprised at the number of doctors I have – which shouldn’t be a surprise in the US healthcare system after you see the number of diagnoses a person has received. She also assumed I wanted more medicine since she told me that considering the medicines I’m already on, she doesn’t want to give me more medicines. (If I had a nickel for every time…..)

And one I haven’t heard before….   she didn’t want to get in the way of any of my other doctors. Psychiatry is very specific the last time I checked, if she’s willing to send records to other doctors then she’s working with them, not interfering.

Probably the most interesting? successful? useful? part of the entire experience? Within 5 minutes of talking to me and looking at my paperwork, she asked if I was ever diagnosed with Borderline Personality Disorder. This means that I’ve had a doctor at Mayo Clinic, psychological testing, and a random psychiatrist all have the same “opinion” – that I do have Borderline Personality Disorder. But no one wants to make recommendations on medications.

She had very little to say about the problems I described with my memory, including lost time, and how through working with my new therapist I’ve come to learn I probably/likely/definitely have PTSD.

She clearly felt I was beyond her capabilities but never actually said this. Really good doctors say this! Great doctors explain why!

In fact, I even felt like she wanted to run away. As she was leading me back out of her office towards the front desk she was walking fast enough to disappear behind the turns in the hall. I’m accustomed to people waiting for you or giving you directions. Logically I know that this was probably the way my brain interpreted the situation – and probably not what happened – but I still feel like subconsciously she was trying to get rid of me/get away from me. It’s super weird to hold both those thoughts at the same time.

No, I’m not expecting a new doctor to have answers –  but the more people involved in a problem, the more likely you are of finding some kind of help. If you can’t help me, refer me to another doctor, please! Or if you aren’t sure how you can help, tell me. This appointment wasn’t bad or terrible, but it wasn’t productive or pleasant either.

Ultimately, she referred me to another place to receive this thing called TMS that’s supposed to help treat depression. I have an appointment tomorrow for a “cost free consult” so we’ll see. Not holding my breath. Insurance, time, and money all figure in.

I’ll need to try another psychiatrist but it’ll likely be a few weeks. Finding a new psychiatrist is difficult on my mental health. Especially with my other doctor appointments and trying to build a relationship with a new therapist. The first psychiatrist I tried never returned  my calls (2 left over 3 days with a message that calls are returned same business day!). So I guess this was a slight improvement. Maybe the third try will be a success.

*image courtesy of inspiro bot. Seemed appropriate based on the various blank spots of various sizes that I have in my memory.