Daily Archives: May 24, 2015

In Memoriam


 
 
Down the street from my house is Greendale Cemetery, bucolic despite its somber purpose.  Huge arched gates frame the entrance.  The meandering roads and paths that travel the gentle hills were once meant for horse and carriage and so, are narrow and graceful, barely wide enough for the landscaping truck to fit.  Graves go back to the 1700’s; names on many stones are worn away, and still other, recent ones, have photographs imbedded in the stones, the living faces of the now dead.  There are the children’s stones, carved angels and lambs sleeping on top; a stone motorcycle; a lion clutching a globe; and married couples interred together, husbands and wives often dying within days or months of each other as if they couldn’t bear to be apart.  And because it is the season, the purple and pink rhododendrons are in explosive bloom, and trees, some as old as three hundred years, offer wide canopies of shade.  It is an exquisitely peaceful place to walk—which is what I’ve been doing there for the past couple of days.
Memorial Day weekend—all the veterans’ graves bear American flags.  As I walk, I find myself drawn to these graves, reading the names, noting the marker in the ground that denotes which war that soldier fought in.  Revolutionary War veterans, Civil War veterans—one soldier who died at Gettysburg, WWI and WWII veterans, and Korea and Vietnam.  Normally, I wouldn’t spend so much times giving honor, normally I would quickly walk the loops, intent on exercise, normally I wouldn’t find myself tearing up by the grave of a stranger who had died in battle.  But I’m already feeling a bit fragile this Memorial Weekend, my sadness close to the surface.

My kids are with my ex-husband at his family member’s wedding.  A wedding that I imagined myself at when we received news of the engagement a year ago.  All year, whenever I imagined May, I imagined the wedding.  Now, of course, I am in my new home, alone, and not there with them.  I’ve been avoiding Facebook all weekend because friends and relatives of my ex-husband have been posting pictures of the wedding and reception.  Most painful, are the pictures my ex-husband posts of himself with our kids, all dressed up and beautiful and there without me.  Pictures of the wedding reopen the wounds I’ve been trying to close these past six months because they remind me of my own wedding, and those very same people who attended our celebration.  And I am reminded of the death of my dream, our dream that began with such surety and hope.
Much like the feeling I get as I walk through the cemetery surrounded by thousands of people who were like me: full of hope for the future and buoyant determination and a belief that they were doing the absolute right thing.  A marriage doesn’t simply die on the day divorce papers are signed.  Dreams are slow to recede.  All those couples buried together, so many stones reading, “Joined in eternity.”  It stops my heart because I wonder and fear: Will I be buried alone?  This isn’t meant to be maudlin—in a way, my grief commemorates the life that once was.  Much like the flags and markers beside the veterans’ stones.      

Time to Find a New Therapist

Time for a change. When I last saw my psychologist, she equated allowing my son to play video games to allowing him to smoke marijuana. She said that the two did the same neurological and psychological damage, that video games produce emotional…

Why I’m “Out” as a Person with Mental Illness

This piece was originally published at The Body Is Not An Apology.

The image features the author, SDF, smilling at the camera. He is an androgynous white person wearing large, round glasses and a striped t-shirt.

Out and proud!

Far and away, the most frequently asked question I receive as a writer with bipolar and anxiety is, “How did you get to a place where you could be this open about your struggles?”

It’s usually followed with a question like, “Aren’t you scared?”

I used to be terrified. Like many folks with a mental illness, one of the first things we’re told is to keep it to ourselves. At times, I existed in a cloud of shame that followed me around wherever I went.

But that’s just it – that’s exactly why I came out and became such a vocal advocate for my community. It’s because of that shame that I started talking about what I had been through. I was tired of feeling afraid, tired of feeling ashamed, and tired of seeing the stories of my community being told by people who just didn’t get it.

I wanted to tell my own story and to reach people like me who needed to know, without a doubt, that they were not alone.

Yes, it’s scary to put yourself out there and tell the whole world – let alone family or friends – about what can be the darkest, most vulnerable part of our journeys. There are real risks involved, too, that people need to weigh when deciding who to tell about their illness(es) and when.

Our safety, our security, our housing, and our jobs can all be at stake because mental illness, unfortunately, is a highly stigmatized status to hold in our society.

But when I weighed all of these risks, and I thought about my fourteen-year-old self, who was contemplating suicide because he felt utterly alone, I knew that I had an obligation to speak up. For me, if I could help make someone’s burden a little bit lighter by being outspoken about my illnesses, the benefits far outweighed the risks.

I remember that the first place I looked for help as a teen was not a guidance counselor, not a parent or guardian, not a friend. Instead, I turned to Google. I searched for things like, “Help, I want to die” and “I’m depressed and I don’t know what to do.” I remember, vividly, scouring the search results, looking for some kind of affirmation or something to hold onto.

The reality is that the stigma around mental health keeps us so silent that we’d rather ask Google what to do than ask our friends or family. We go it alone because we’re ashamed, we’re afraid, we’re confused, we’re overwhelmed, and we think that our struggles make us too much of a burden for others to deal with.

There was a time when Google knew more about my mental illnesses than my best friend did.

After spending too many years feeling isolated, disconnected, and self-hating, I began to write about what I had been through. And, with time, that writing ceased to be a private exercise and instead, became the beginnings of a blog. That blog, which came to be known as Let’s Queer Things Up!, helped bring into sharp focus all of the reasons why being out as someone with bipolar and anxiety was the right decision for me.

Why am I out?

Because I want to build community around mental illness, especially for those who, like myself, are transgender and also grapple with these illnesses.

Because, too many times, I’ve received emails that said, “You’re genderqueer and bipolar? I thought I was the only one.”

Because too many people think of folks with mental illness as anything but people – as criminals, or “psychos,” or burdens on society rather than fully human and deserving of every bit of compassion, respect, and dignity that all people should be afforded.

Because, when you take away the rights of people with mental illnesses – when you vote against important legislation or elect a politician who wants to strip us of the resources and support that we need – I want you to remember my face and remember my words.

Because visibility matters, and because I want teens to grow up in a world where, when they are searching for people who have lived through what they’re going through, they can find them.

Because a teenager sent me a letter that said, “I found you through Google. I’m trans and I have bipolar. I didn’t think I could be successful, but I look at everything you’re doing, and you make me believe in something.”

Because I want to create a safe space for others to use their voices, too, so that together, the collective vibration of our voices will be an undeniable force.

Because you cannot deny our personhood, our worth, our brilliance, or our power when we work together.

Because teens would rather tell me they’re suicidal through my Tumblr ask box than pick up the phone and call a hotline or a friend.

Because an article I wrote asking people not to ridicule someone with a mental illness was read in over 180 countries by millions of people around the world.

Because it was an article I never should have had to write in the first place.

Because no one with a mental illness should ever feel alone.

Because there is enough shame surrounding mental illness that we have to even consider whether or not to “come out.”

Because we shouldn’t wait to have our stories told for us. They are ours to tell.

Telling the world that I have bipolar disorder (and later, anxiety) was not an easy choice to make. Friends and family expressed concern, asking me whether I was sure I would want the word “bipolar” forever attached to my name for anyone in the world to see. Others told me it would be a career-ruining move that would haunt me for the rest of my professional life.

But in order for other people with mental illness to have a life – to have careers, to have a future – they first need to know, unequivocally, that they are not alone, and that others now thrive with these same illnesses that threatened to pull them under.

When seeing is believing, visibility is everything. If living visibly means that I give someone with a mental illness the chance to keep going, I will keep the word “bipolar” forever, and I will proudly do the work that I’m doing, even if it means that a lousy potential employer puts my resume in the garbage.

There’s something poetic about the fact that Google was the first place that I found people like me, and nowadays, I am the person that people are finding when they search for help. The tables really have turned.

Even on the days when I feel afraid and question my decision to go public with my disorders, I remember what it felt like to turn the internet upside-down as a teen, looking for someone, anyone, who knew how I felt. If I can be that person for someone else — the link that opens up their world and keeps them going — it’s all been worth it.

 Sam Dylan Finch is a queer activist and feminist writer, based in the SF Bay. He is the founder of Let’s Queer Things Up!, his blog and labor of love. With a passion for impacting change through personal narrative, Sam writes about his struggles and triumphs as genderqueer and bipolar with the hopes of teaching others about his identity and community. When he isn’t writing, he’s probably eating takeout and dancing to Taylor Swift.

Connect with SDF: Website ; Facebook ; Twitter ; Tumblr


The Bouncy House That Is My Bipolar Brain

Sunday, bloody Sunday. (Err, now I have U2 stuck in my head and I really really dislike their music.) My kid woke me at ten after six. Not amused. Then the cats started yapping for breakfast. So I spent my first ten minutes doing everything but tending to my needs. Even my bladder has had to learn it comes second no matter how much it protests.

To add to my general discomfort, I am pretty sure I’ve had a chest infection for five months based on the persistent cough, horking up phlegm, and now the recurring pain in my side. Thing is, I avoid anti biotics when I can because, being female, they just lead to secondary infections and guess what. Insurance won’t pay for that medication. So I tough it out and it goes away then comes back then goes away, lather, rinse, repeat. I’m not stupid. I know I should get my ass to a doctor for an anti biotic. But in the grand scheme of things, persistent cough and phlegmage are lesser evils than what results from the medication to fix it. Okay, I’m a little stupid,but every time I go to a doctor, it turns out exactly the same way: Lose weight, stop smoking, get exercise, and every other complaint is because you’re mental. Meh. Physical discomfort is nothing compared to the misery doctors inflict. Especially considering last time I went to find a general practitioner who accepts my insurance and six of them took my info, said they’d get back to me, only to inform me “We’ve decided not to take you on as a patient.” Um…It’s like applying for a job to find a fucking doctor here.  Besides, let it turn into pneumonia. Then they can all marvel at how I managed to keep walking upright all this time and thus prove my point…The mental illness shit IS debilitating, physical stuff I can handle.

My brain is a bouncy house of billowing mindless thought this morning. No doubt starting a new med and the upcoming hormonal week are in play. On the plus side, I’ve not noticed many side effects from the Trileptal. Compared to the Latarda, this shit is awesome. I take it once in the morning and don’t even think about it the rest of the day. Of course, the doctor said this is a starter baby dose and it can go wayyyy up, so the jury remains out on what the future holds. Yapping kid, mewling kittens, the overload is instant today. I got an email from the Sunday school and they asked if I could bring her in today and they’d bring her home. Um…Fortunately, I don’t have to feel guilty for not being on board because my dad called and asked if they could take her to the carnival that’s in town today. Not like I have the money. Or the nerve to meander in crowds. I used to love carnivals. I’ve never taken my kid to one. Not in six years. I suck. This anhedonia has gotten ridiculous. And it wasn’t always like this. That reaction to Nardil fucked me up for life, nothing’s been the same since that.

I keep braving these “self help” blogs and the more I read, the more disgusted I get. Because it’s not as easy as they make it out to be. OMG, you had a three month period of anxiety and panic attacks? THREE MONTHS? And you cured yourself? Wow. That is impressive. NOT. And telling me I holding myself back from my goals is just ass trash. Much like all “mommy” magazines I read in my first trimester of pregnancy, they made me more neurotic instead of better and I swore them off. If these things help others, great. I’m just not in that group. I wish I were.

I’m sure it seems like I have lots of excuses and self justifications. I think more to the point was the assessment the psychologist made last time I was up for disability review, a doctor of THEIR choosing. “It’s really a case of the sun, stars, and mood aligning for you to stabilize.” Yes. That’s exactly what it is. I’m not some weakling wussy. If all is aligned, I have been able to make trips to the east coast, the west coast. I braved three big airports, long bus trips. I’ve had 14 kids at my house without breaking a sweat. I’ve gone out on nights when I was feeling solid. It’s not that I’m incapable. It’s that I am incapable consistently. Life demands consistency. With a multiple diagnosis, you can’t be running on four cylinders for maximum functionality. It has to be all eight or nothing. And THAT is as rare as an eclipse and generally short lived. There is no one it sucks more for than me. It’s a hindrance that has lead to much self loathing. It is not some excuse to avoid scary things.

And the aftermath of forcing myself to live at warp speed is the same again and again, even when I am in the sun, moon, stars place. (Which since the Nardil reaction in 2000, has not happened very often at all.)

And if I must be honest…I suppose I come from a family of complainers. We don’t communicate, we just bitch. But I vent more than anything and try to find coping mechanisms. My family…Not so much.

Housework. I am drowning again. Yesterday, once I gave myself permission to do nothing, I managed to tackle the sink full of dishes and I cleaned one litter box. Washed my bedding. And I cooked myself a good meal of pork chops, au gratin taters, and super fine steamed green beans. Gave myself and the spawn both showers. It may seem like very little but as far as my days go, it was half ass productive. Today…I am going to have to venture to the store for some sugar and another can of moist food for the newbie kittens but I don’t look forward to it. Much like yesterday,I drove by a yard sale and didn’t even feel tempted to stop.Normally that makes me very happy, almost giddy. I can’t even enjoy yard sales, that’s how far under the surface I am. This isn’t just mundane or scary stuff. This is everything. It’s exhausting.

I went to bed at 9 last night. And kid you not, I woke up so many times I lost count. I don’t know why for the life of me I can’t stay asleep. It used to be my kid waking me and she still does, but usually just once or twice a night. I’m waking up every hour on the hour, basically. I don’t know why. Best the doctor can say is, anxiety. Except when something is anxiety related, then he says hypomania. GRRRR. It’s not me being arrogant and claiming to know more than the doctor. It’s just…twenty plus years living it daily. I know me. Or least I used to. Lately, I don’t know a thing.

I checked out five library books. I’ve read two, and started reading the other three only to bookmark and abandon. They’re due back Tuesday. I don’t know if it’s just lackluster writing on their part or if my attention and anxiety are just hindering. I was doing so well with the focus prior to the Latuda. WTF. And considering it affects hormone balance, I am wondering if I will ever get back to “norm”. My hormonal balance is very tenuous and this was the last thing I needed. It’s not a good sign when even the pharmaceutical literature says it affects hormones yet your doctor insists it doesn’t. I don’t think I stand a chance in hell here. I am doomed. DOOOOOMED.

Meh. Time to take a Xanax and calm the bouncy house. Really don’t like taking them in the morning since by afternoon I will be climbing walls. If I take one then, my bedtime dose is off so it takes hours to get to sleep. I can’t find a happy medium and I am starting to think it’s like that pot of gold at the end of a rainbow. Doesn’t exist.

Okay…Can’t write anymore, kid won’t stop fussing and before long I will be writing what she is saying instead of my own thoughts…It is going to be such…a…long…summer.

 


Haiku Cycle

Break time here at the
synaptic schoolyard. You can
ride the swings all day.

Day lights sights you see,
saw before and that may be
In sight tomorrow.

Tomorrow times out
Wheels round and ticks away the
Body clock of mind.

Mind and brain play tag
I’m it as ducks and geese still
Wait while we circle.

Circle back and start
again, or stop before my
feelings crack and break.

Note: Poetry is something I used to do, years ago. After my Great Meltdown, my therapist suggested that I view it as an opportunity to rebuild myself, discarding things that were no longer useful and reclaiming things I want in my life.

So I decided to try poetry again. I used to write mostly free verse, but I decided to start with more structured forms because of needing some structure in my life now.

I have started with a cycle of haikus. They do not have to be read in order. Picture them as a ring. Pick any one as the starting point.

If you like this, and as inspiration strikes, I may attempt some more poetry for this blog. Is there a sonnet in our future? Dare I say it – a villanelle? Someday a sestina? We’ll see.


Filed under: Mental Health Tagged: bipolar disorder, bipolar type 2, blogging, mental health, mental illness, my experiences, poetry, writing

bloggorrhea

Scheduled post.

I got a phone call saying that I had an appointment with my psychiatrist the next day. Now, I shouldn’t have had, because they’d already pulled mine forward when there was a cancellation earlier this month. Anyway, considering the %£&@©]¢ing mixed episode and all its little jobs, I said said fabulous, see you tomorrow. As usual I got there early and hunched into a pile of National Geographics, fidgeted with my phone and drank lots of water. Two schoolkids (sisters) were sitting nearby and a round blonde woman on the other side. And then the blonde asked one of the kids what work she was busy with and the kid said something about the effect of technology on music. The blonde said you’ve got to include John Cage and I muttered yes you do.

Eh, that’s the thing with leaving a post unfinished and then changing mood gears and coming back and… Meh.

Long story short – sweet kids, nice chat about my tats, the ones they want, disapproving grandparents and the tattoo on Jesus’ thigh (whut?). Do not fret, of course I googled it. Herewith, the top result for the search.

In any case, it does not seem that Jesus has an actual tattoo. The best way to confirm the truth of the matter is to be with Jesus when He returns to wage war upon those who have taken the mark of the beast. You can see for yourself. Please read our Got Eternal Life page and see how to be saved and receive eternal life.
Read more.

Well I think that’s fair. Is it bad that I instantly pictured a muscular thigh with Lord of Lords, King of Kings on it in gothic script? Nah. Dude was a righteous freedom fighter.

Anyroad up.

Song has fuckall to do with post. I just reminded myself of it while writing, and, well, reach out and touch Dave…

Good psychiatry thereafter, apparently the psychosis, anxiety and mixed ep are all down to the first therapy session. We never do psychotherapy with someone in a major psychotic break, or a schizophrenic who is permanently psychotic. Interesting. The content of the psychosis isn’t significant, but my distress needed addressing and de-stressing.

I got the old meds tweaked a little:
Lamotrigine 400mg
Serdep 200mg
Lamictal 50mg
Espiride prn
Something or other for the reflux, courtesy of lamotrigine.
Bye bye wellbutrin and methylphenidate. Now that the latter two are gone baby gone, other things shall undergo steady titration, but I can’t remember wtf. No new diagnoses though! o/

I left with helium in my heart, managed to leave my keys in the consulting room (I’d got a lift there, I don’t drive when I consider my judgment questionable. Alright, more questionable than usual). Nipped in to deliver a script for lyrica to my bipolar pharmacist friend (who shall henceforth be referred to as my BPF, because I’m lazy) and also my own script for more something or other and something or other for reflex. I have no idea what I did between getting home and this morning, and I don’t care. And ja you’re right, I absolutely am most certainly heading for mania, but I will drug myself into a calm space once I’m done with this verbal s(p)ewage. (My psychiatrist told me that my speech is frequently pressured, but never inappropriate. She’s never seen me after a teaspoonful of alcohol.) I can’t remember what she said about my head rushes.

So today I had my now regular therapy appointment, I got another lift because, as you can tell, I’m all over the fucking place at the moment. I’m like, as bipolar as bipolar weather *snrk*. And so a therapy session ensued, containing the usual ingredients, plus a little detour.

Hmmm, the telescope zoom in/out vision you experienced on the reef is sometimes an epilepsy thing. Well, the wet dishrag that is the NHS kindly gave me an EEG, a sleep deprived EEG and an MRI, in search of that very thing. The result? *NHS nerd voice* weeeeellllll, there are abnormalities, but no more abnormalities than a normal person’s abnormalities, so it might all be normal, orrrr we can look further, but the NHS is a diplodocus and so it could be a loooong process during which you could potentially die of boredom, orrr we could start you on epilepsy meds, but if you stopped taking them, you wouldn’t be allowed to drive for six months aaaaand we will now forget why we were prodding you in search of epilepsy in the first place, give you a few more mental issues absolutely free on the behemoth NHS and so it’s all your choice because frankly we’re tired of being sued… Yup, the NHS talks in proustian length sentences and a doomsayer tone and a naysayer’s promise. I yelped something along the lines of CTRL ALT DELETE any get me the hell back to civilised Africa, like yesterday. And that’s pretty much what happened. The therapist’s eyes went all @@ and she said, so what is their version of normal if nothing is normal? I muttered a few choice, short words about the enn haitch ess.

I’d like you to fill this in *officious rustling of paper* so that we can track your mood. It’ll be a pain, because it’s every two hours or so.
No, that’s just silly, I’ll customise the tracker app I’m using and do it on that.
I’m a technophobe.
I’m not. It’ll work fine, I promise.
Cool, I’ll bring my ipad next week.
*silent thought* ipad? Oh lawl.

Okay, I think I can slow down to a gallop now.

By the time you read this, I’m hoping not to be quite so hopping helium happy hypomanic. Apart from anything else, it’ll nudge my writing back towards the realm of the coherent. Either that, or I’ll be blogging in rhyme.

*disappears in a puff of pills*

PS (if you could actually follow all that babble, please phone your psychiatrist asap)

Dungeons and Doctors

It has only been recently that I have realised just how much I now mistrust doctors, and how little faith I have in the medical system.

I am the worst kind of patient. I spend hours trawling through medical journals before appointments, comparing random control trials. It must be the researcher in me.  I project my point of view in a fairly assertive manner. I am not afraid to ask for what I want. I am not afraid to offer my view on the treatment protocol and dosage. I don’t want to be told “you’re fine”, or “you’re not fine”. I want to be given print outs from all my tests and all my procedures  and given my exact blood levels so I can determine for myself my exact level of “fineness”.

I, with absolutely no medical training, believe I know more than doctors about my body and mind. And I really wish I could dampen this line of thinking. I wish I could trust the people that are responsible for my care. I wish I didn’t question every damn aspect of my treatment.

But you see, my past experiences have made me this way. Over the years I have had to learn how to navigate the medical system.  I am used to having to fight tooth and nail for the treatment I need. I expect to be dismissed. I expect to be turned away. I expect to be denied treatment. So I arrive at each appointment on the defence and ready for battle.

Amongst other nitwitish behaviour, I have had the privilege of doctors telling me that:
– I was just a new mother who needed a bit of sleep. Actually I was psychotic and suicidal, and had just spent 45 minutes describing my symptoms in detail to the doctor. My baby was seven months old and had been sleeping through the night for at least five of them. A week later I was admitted to a mother and baby unit where I was kept for 2 months. The hospital told me I was one of the worst cases they had seen.

– That I had a case of gastro, and perhaps some endometriosis pain. I was actually in agony due to my autoimmune disease. And when I say agony, I mean that I had to be tanked up on IV morphine. I feel this instance is partially forgivable since my disease is so incredibly rare. But surely the fact that I was screaming in pain and had to be administered morphine was a clue that this wasn’t a case of “normal” gastro, and warranted further investigation.

– When admitted to the psychiatric ward, I was initially refused treatment for my autoimmune disease. Apparently, despite having a formal diagnosis from biopsy results from another doctor, and despite my diagnostic doctor giving explicit written instructions on the type and dosage of medication I needed, my 25 year old registrar didn’t believe my condition existed as she hadn’t heard of it. Bitch, please. My specialist with decades of experience hadn’t heard of it until recently. And despite the fact that I consider myself a reasonably intelligent person I highly doubt I could fabricate such an elaborate diagnosis involving the infiltration of certain white blood cells.

– as a psychiatric inpatient, my gastroenterology team continually avoided seeing me. My nurses called them repeatedly. It was made abundantly clear that I was their least priority. I dunno. Maybe I smelled?

– as an inpatient my surgical team repeatedly prepped me for the surgery and procedures I needed, before cancelling at the last minute. I understand hospitals are busy places and things get bumped. But I was an inpatient at that hospital for 9 weeks, and each time I was told I was at the top of the list. To this day I am not sure why I wasn’t given the treatment I needed and why I eventually had to be referred to entirely different hospital to receive it. And how that hospital managed to conduct the surgery on the day and time they said they would.

– I was explicitly denied nutritional treatment because I was a psychiatric patient. Even though my autoimmune disease is heavily related to diet. They did tell me that if I were on a medical ward I could receive the treatment. Which didn’t improve the situation. Or my attitude towards them.

– I was left in severe pain, for eight hours, because an the on call doctor basically couldn’t be bothered to come down to the psych ward. When he did arrive the next morning it eventuated that I was actually extremely ill, and was rushed off for an emergency CT scan. Not a hypochondriac after all!

9-ot

I believe the core of the problem was that I was a psychiatric patient.

When you are a psychiatric patient you lose your voice. You lose your power. You are considered to be “crazy”. I was in a no win situation where I was given poor and sometimes downright neglectful medical treatment, but if I tried to object I was seen as over reacting, or causing trouble. I was “not in my right mind” after all. What the hell do I know? If I objected,I was medicated, because that’s what happens in psychiatric wards. And if I objected to that I was threatened with injections and security guards. I was silenced.

This would not happen to someone with a physical illness, and a physical illness only.

I often feel sorry for my newer doctors today. The ones who have done nothing wrong. The ones who are incredibly helpful and supportive. The ones who listen to me. The ones who are being punished for the actions of others.

But there is just this large part of me that refuses to hand over my trust to them. I NEED to be in control over my care. I never want to be in the powerless situation I was last year.

I just have this overwhelming feeling that to ensure my own wellbeing I need to keep fighting these Dungeons and Doctors.


Dungeons and Doctors

It has only been recently that I have realised just how much I now mistrust doctors, and how little faith I have in the medical system.

I am the worst kind of patient. I spend hours trawling through medical journals before appointments, comparing random control trials. It must be the researcher in me.  I project my point of view in a fairly assertive manner. I am not afraid to ask for what I want. I am not afraid to offer my view on the treatment protocol and dosage. I don’t want to be told “you’re fine”, or “you’re not fine”. I want to be given print outs from all my tests and all my procedures  and given my exact blood levels so I can determine for myself my exact level of “fineness”.

I, with absolutely no medical training, believe I know more than doctors about my body and mind. And I really wish I could dampen this line of thinking. I wish I could trust the people that are responsible for my care. I wish I didn’t question every damn aspect of my treatment.

But you see, my past experiences have made me this way. Over the years I have had to learn how to navigate the medical system.  I am used to having to fight tooth and nail for the treatment I need. I expect to be dismissed. I expect to be turned away. I expect to be denied treatment. So I arrive at each appointment on the defence and ready for battle.

Amongst other nitwitish behaviour, I have had the privilege of doctors telling me that:
– I was just a new mother who needed a bit of sleep. Actually I was psychotic and suicidal, and had just spent 45 minutes describing my symptoms in detail to the doctor. My baby was seven months old and had been sleeping through the night for at least five of them. A week later I was admitted to a mother and baby unit where I was kept for 2 months. The hospital told me I was one of the worst cases they had seen.

– That I had a case of gastro, and perhaps some endometriosis pain. I was actually in agony due to my autoimmune disease. And when I say agony, I mean that I had to be tanked up on IV morphine. I feel this instance is partially forgivable since my disease is so incredibly rare. But surely the fact that I was screaming in pain and had to be administered morphine was a clue that this wasn’t a case of “normal” gastro, and warranted further investigation.

– When admitted to the psychiatric ward, I was initially refused treatment for my autoimmune disease. Apparently, despite having a formal diagnosis from biopsy results from another doctor, and despite my diagnostic doctor giving explicit written instructions on the type and dosage of medication I needed, my 25 year old registrar didn’t believe my condition existed as she hadn’t heard of it. Bitch, please. My specialist with decades of experience hadn’t heard of it until recently. And despite the fact that I consider myself a reasonably intelligent person I highly doubt I could fabricate such an elaborate diagnosis involving the infiltration of certain white blood cells.

– as a psychiatric inpatient, my gastroenterology team continually avoided seeing me. My nurses called them repeatedly. It was made abundantly clear that I was their least priority. I dunno. Maybe I smelled?

– as an inpatient my surgical team repeatedly prepped me for the surgery and procedures I needed, before cancelling at the last minute. I understand hospitals are busy places and things get bumped. But I was an inpatient at that hospital for 9 weeks, and each time I was told I was at the top of the list. To this day I am not sure why I wasn’t given the treatment I needed and why I eventually had to be referred to entirely different hospital to receive it. And how that hospital managed to conduct the surgery on the day and time they said they would.

– I was explicitly denied nutritional treatment because I was a psychiatric patient. Even though my autoimmune disease is heavily related to diet. They did tell me that if I were on a medical ward I could receive the treatment. Which didn’t improve the situation. Or my attitude towards them.

– I was left in severe pain, for eight hours, because an the on call doctor basically couldn’t be bothered to come down to the psych ward. When he did arrive the next morning it eventuated that I was actually extremely ill, and was rushed off for an emergency CT scan. Not a hypochondriac after all!

9-ot

I believe the core of the problem was that I was a psychiatric patient.

When you are a psychiatric patient you lose your voice. You lose your power. You are considered to be “crazy”. I was in a no win situation where I was given poor and sometimes downright neglectful medical treatment, but if I tried to object I was seen as over reacting, or causing trouble. I was “not in my right mind” after all. What the hell do I know? If I objected,I was medicated, because that’s what happens in psychiatric wards. And if I objected to that I was threatened with injections and security guards. I was silenced.

This would not happen to someone with a physical illness, and a physical illness only.

I often feel sorry for my newer doctors today. The ones who have done nothing wrong. The ones who are incredibly helpful and supportive. The ones who listen to me. The ones who are being punished for the actions of others.

But there is just this large part of me that refuses to hand over my trust to them. I NEED to be in control over my care. I never want to be in the powerless situation I was last year.

I just have this overwhelming feeling that to ensure my own wellbeing I need to keep fighting these Dungeons and Doctors.