How Not to Healthcare in America

We all know our healthcare system is not great, along with all else in this country at the moment. As a trafficking survivor, informing my doctors of such is something that seems pertinent to a healthcare provider especially given my specific experiences. My primary care doctor took the information and uses it appropriately, to make informed decisions about my care. He occasionally asks how I am doing with self-harm as it is one of the things that is important to my care. And he asks due to real concern and desire to support in the best way possible not for any malicious reason. This is the same doctor that has filled out all of my paperwork for short and long term disability though my job since my strokes. And the same doctor that is temporarily handling my pain due to issues with my pain specialist that I will discuss. My primary care doctor, is by far the best doctor that I have ever been seen by. He has been my doctor for about 2 years and will be until he no longer practices.

There are several things that work against me in terms of healthcare aside from being a trafficking survivor; I am a woman, I am plus-size, I am gay, and I had strokes at 25 years old. The only thing in my favor is that I am white, my whiteness gets me to be listened to even if not necessarily heard. My whiteness gets me to a room in the ER whereas the black woman across from me who’d been there for hours with a VISIBLE ailment was still in the waiting room. Our healthcare system was built by middle aged white men FOR middle aged white men.

Rewinding a bit to being in the hospital with my strokes for most of July 2017. While in the hospital I spent one night in the ICU (intensive care unit), 5 nights in the IMCU (intermediate care unit) and several in the stroke/neuro unit. During my stay I saw several neurologists as they do rotating shifts and they all thought I was being dramatic, if not for the scans I do not think they would have believed me at all. One neurologist in particular, ordered a psych eval because she literally thought I was crazy, this is what she told the psychologist. The psychologist and I had a good talk though, about my history being a trafficking survivor and with self-harm and my mental illnesses. We talked about the fact that my anxiety is a contributing factor in my pain and vice versa, which I stated not the psychologist. I think that is when he realized the neurologist was being judgemental and not professional. This is also the neurologist that withheld all of my medications for almost a full 24 hours including the blood thinner that I was put on because I almost died. This is when I was labeled drug-seeking because I was in pain. As if a tear in ones artery isn’t painful!

As someone with chronic pain, I learned quickly that you almost have to play dumb when it comes to medications otherwise you are seen as drug-seeking. I was diagnosed with fibromyalgia originally in 2011. This was the beginning of my journey with a diagnosis of something that, at the time, I didn’t know was not seen as a real disease. Since then so much has happened resulting in many other diagnosis, a multitude of ER visits, and several specialist visits. I taken about 100 different medications through the last 7 years, most of them not working. Each time I’ve seen a new doctor, it’s been the same introduction, leading with my trauma history, into the laundry list of diagnosis, my current medications and providers, and lastly what I’m seeking from them. This last part is where you have to watch what you say. You can’t go into a doctor and state you need pain medication or even an antibiotic. This request has to be thought about, refined, and stated in a ‘correct’ way. If you get upset, cry, or seem anything but calm, cool, and collected you get labeled as dramatic, drug-seeking, and crazy.

The dreaded pain scale. Anyone who’s ever been inside an ER knows what scale I’m talking about. This 0-10 pain scale is what is standard in our healthcare system, 0 bring no pain, and 10 being the worst pain imaginable. First off, as humans, I don’t think we ever have a 0 level pain, not this day in age at least. Secondly, they define worst pain imaginable as someone sobbing not being able to make out words and curled up in the fetal position. Yet, if you present like this you are told to calm down and use words and if you don’t talk to them they can’t help you etc. Then you are labeled as dramatic, drug-seeking, and crazy as mentioned above. So here we are at this crossroads of a no win situation. When you factor in chronic pain, you have to take in consideration the definition of chronic which is something that is never ending or relentless something that has lasted for more than a few months. When one lives with this pain, they develop a higher pain tolerance the longer they live with it. That being said their pain scale changes, when comparing the pain of someone with chronic pain to the pain of someone without is not only unfair but also unrealistic. Those of us live with a pain level that is higher than most people could function with. For example, my average pain level on this arbitrary scale is at 8 but in reality when compared to someone who doesn’t have chronic pain it would probably feel like a 12-15.

Navigating the healthcare industry is a minefield already, and then you throw in Donald Trump’s election, the healthcare “reform” he’s done, and the laws he’s set in motion in terms of discrimination make this an impossible task. This has given doctors the ability and validation to be jerks. This has allowed them to label us as these things and corner us because of the things we have no control over with no legal recourse. Slugging through this broken system is dangerous, anxiety inducing, and costly. Please take someone with you when at all possible so you not only have a witness but also someone to help you remember what was discussed in terms of treatment.

~Sarah

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Twenty-five Days

Until three years since I cut
Surreal
Is that time
A long yet short journey of freedom
It really is like an addiction
We like to think its not
But I promise anyone
Whose in recovery will tell you there’s
Withdrawals and cravings and relapses
Like there is a deep longing in your soul for that
One last cut
One last time
But that one
May be the last
I wasn’t ready for that risk
That’s why I quit
It takes risk
And accountability
And struggle
And tenacity
It is hard
One of the hardest things I’ve done
But also one of the most rewarding
I’ve mentioned to a couple people
About the tattoo
I plan to get in August
For my 3 year anniversary
Just a simple ‘III’
On my arm
The Roman numerals
And I’ve had several comments
About pride in me
And my strength
And how it’s a good way to remember
And a positive coping mechanism
And a good way to cover the scars
But to me
It’s a whole lot more
It is my accountability
It is my victory count
My proof of things achieved
These scars are nothing for me to be ashamed
They are my battle scars
They are the the times when I wanted to give up
But I didn’t
They are the times
I was hurting to much
For my little brain to handle
They are the days I kept living when I wanted
So badly to die
I am proud that I no longer have to cope
By choosing an almost death
Over a full death
I am proud that I survived

~Sarah

FAQ: Why I Self-Harm

***Trigger Warning: Cutting, Self-Harm, Hospital, ER, Medication***

 

I have been asked no less than 1000 times why I’ve self-harm, like why I do it. And it’s taken me until recently (4.19.16) to be able to answer this question in a way I feel is accurate for me. The answer: because it’s the one thing that I could always count on. It is the one thing that never let me down.

I have/had a routine or some would call a ritual. It includes preparing my tool, the actual act, and then the after/clean up. It’s something, one thing, my brain can focus 100% on for a few minutes. As an autistic person, this is rare…even hard. I feel so much. All the time. Sometimes it just needs to stop. Stop. For 15 minutes. And for 15 minutes I can have a single thought. A single focus. – A lot of people say exercise is a good alternative. For some maybe, for me it is not. For me, and I know for many others who struggle with self-harm, exercise is also a struggle of its own.

The Prep Stage

The prep stage includes new tools every time and rinsing the new tool with water.  (I promised myself before the first time I self-harmed I would only use clean ones each time, and never use one more than a 3-4 times). Then I would get in the shower to actually self-harm. (Only a couple times did I ever not get in the shower to harm and it was the times I ended up cutting super deep on accident: I was in a hurry).

There was a couple times growing up when I forgot my tools in the bathroom after I was done and never once was I caught, but man I was terrified of it. And then when I left home and lived on my own I constantly had several tools in my shower “just in case” is what I told myself. It was my safe guard.

After Self-harm

After I have self-harmed, I then have something to take care of. Something to fix. Something to heal. Something to change. I rinse it in water in the shower. I make sure the cuts stops bleeding. And then go about my shower. After my shower, drying is complicated because I mostly cut on my forearms, (early on I cut my thighs and my stomach, mostly because they were easier to hide). I would dry careful, as not to rip any open. And then I wear long sleeves so no one sees but also to protect them from germs. And I would clean the cuts once a day with warm water in the shower. (Later I did start covering them with gauze and an ace wrap, and treating them with lavender).

Today

It has been almost 3 years since I last self-harmed (32 months and 10 days if you want to be exact). And it’s been hard, I’ve had times where I really struggled to not self-harm. The last 2 ½ months or so my anxiety has increased significantly, because for the first time in my life all of my basic needs are met. For the first time in my life, I am able to not have to live in a dissociative or partly dissociative state all the time. And the last couple weeks have been particularly hard not cutting, so hard I even went to the psych ER (for anyone who knows me personally knows that is not something I am a fan of and use only as a last resort because I have had several bad experiences with it). It was truly life altering though, my fiancé took me and stayed the entire time by my side and spoke and explained things when I couldn’t. Being autistic, it’s hard for me to put things into verbal words sometimes. The ER is a dedicated ER here in Central Texas for psychiatric care and I received fantastic care, the doctor and the social worker really listened to me and what I needed and make sure I was as comfortable as I could be. They gave me a trial prescription to try in the mean time before I could seem my normal doctor, and they gave me awesome resources for therapy. This trip truly changed my life.

 

~Sarah