Posts Tagged ‘Patient Experience’

I’m slowly planning out a series of lecture/podcasts on my patient story. The motivation is to tell a complete and complex story.

Here’s a rough snippet of the first episode, where I talk about the first time my period changes significantly and how the nurse spent a lot of my appointment slut shaming me.

I’m gonna grab some better recording equipment, but this is what you have to look forward too.  A series of lectures about my patient experience with Heavy Menstrual Bleeding.

You can check it out on Sound cloud

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hysteriaHysteria: A Surgical Fantasy was made for Dames Making Games Feb Fatale 3 Killer Interfaces in 2015. It is a part of a series of art works about my experiences as a patient. It was my first finished Construct 2 game, and my first controller. It is a crocheted uterus and fibroids, with a knitted endometrium layer. Fibroids are tumors that grow in the uterus. (Note: the Uterus is not to scale, but the fibroids are to scale.) Wire is woven into the fabric to create a giant circuit. It is a prototype based off the board game Operation with a tablet interface to view your score and ending.

Fibroids can be placed in various Velcro areas,  including pockets to represent my understanding of submucosal fibroids. I’m told that cutting the fibroid from the Velcro results in a very visceral sound that discouraged a few players because it was a little too much bodily horror.


Players are given real surgical tools  (scalpel, hemostats and forceps) which are connected through wires to a Makey Makey. If the tools touch the wire woven into the uterus, it connects the circuit and the patient suffers damage, lowering your score and eventually botching the surgery. This game over is represented by a LEGO surgeon burning medical records in a recycling bin with the caption “This never happened.” The goal is to remove the fibroids while touching the uterus for the minimal amount of time.

The score is represented by a stop motion animation of red LEGO bricks which represent blood loss. 2016-12-28


Your ending is determined by your score. The lower score, the better story scene, the higher, the worse scene.  All of the LEGO stories are from my heavy menstrual bleeding and fibroid treatment. These range from some of my worst stories, such as the image above which is about me trying to explain how much pain I am in, no one believing me, and my post op nurse telling me a joke to soothe me while I am hyperventilating.  It turns out I am resistant to painkillers and general aesthetic. I did tell the anesthesiologist this resistance runs in my family before my surgery, but I guess he needed to prove me wrong. I was painfully right.  Another is how the operating table was set up wrong when they wheeled me in, the earlier ones are typically times when my treatment was decent.



(C/N – medical error, suffering helplessness, loss of bodily autonomy)

(I also use a bit of medical jargon to list procedures.)

I became fascinated with fibroid removal surgery when I needed mine out in 2012. I watched laparoscopic, open laparotomy, hysteroscopic surgeries. I was told about endometrial ablation, Uterine artery embolization, robotic surgery, hysterectomy,  etc. I wanted to pick the perfect surgery for me. A Fellow explained an open laparotomy to me, which I explained to him what I had watched and that it seemedsoopink a little too much with like a 10 inch opening.

The Fellow and I discussed that I didn’t want to use the fibroid shrinking drugs**. They make the surgery easier because the fibroids are smaller. I didn’t take them because short version: Bad side effects (depression, menopause, mood swings, increased sex drive, hair loss, hair gain, etc) and too expensive. The Long version could be an entire essay.

I picked the laparoscopic surgery as that is what my surgeon was famous for and it had the shortest wait time and recovery time. I was promised I’d be out that evening and back at work in three days. I felt like I had picked something that was good for me.


But, the surgeon misrepresented what he did. He told me it was laparoscopic, with two incisions instead of three. He needed a bigger second incision for more elbow room, and I didn’t think the one inch he gestured was a big deal. He implied there was a second hole in the belly button for the camera, but there wasn’t or at least I didn’t find it. He didn’t switch because I didn’t take the shrinking drugs, he actually doesn’t do laparoscopic surgeries, whether he stopped because morcellation has fallen out of favour, I don’t know.  What he actually does is single incision mini laparotomy, which is closer to 4-5 inches, rather than the 1 inch we agreed on. ‘Out that evening’, really meant a two night stay, and back at work, well, I took two weeks off… Later I found he wrote mini laparotomy on all my records, but in the visits he always talked about a laparoscopic surgery.  A Mini laparotomy comes with a different set of recovery times and complications (it can be similar to a laparoscopic surgery), all of which I was uninformed of and was never entirely explained until 8 days before my surgery, rather than the three months when we agreed. His excuse was that it all was just an incision and I was making a big deal out of nothing. He told me he couldn’t give me an estimate for recovery or really any information because he didn’t know (this is when you drop your surgeon), I would apparently learn when I woke up. A nurse would tell me I’d need 6 weeks off, why she knew and he didn’t, I don’t know.

I had waited for 8 months due to various mistakes, I agreed to a surgery I didn’t want because I had 26 -28 day period (This means I had 2-6 days of non bleeding), where I would lose a liter of blood on day 2 and it would leak out of me for the other days. I was in constant pain because of cramping (as result of a mistake) which the fellow compared to a similar pain as labour. I was afraid I would die from blood loss if I waited longer. I already had mini strokes and possibly  two micro heart attacks from anemia, so worrying about dying or going into hypovolemic shock wasn’t illogical. I agreed to this surgery, because I couldn’t face another 8 months.  (I have a lot of thoughts on this, but those can be separate papers. )


Actual advice I received from a GP.


It was my body. I had the right to be informed about my choice. I wasn’t. That was taken away from me. It made me feel like my body wasn’t mine. My say, or my life didn’t matter. I don’t even refer to it as mine in the present tense, which means I still feel that way.

People argue with me about this and say well it saved you, so you should be glad. They helped you, you should be grateful. Doctor’s have stressful lives. “You are the 1%.”  I know doctors who yell at servers because they got the wrong salad dressing and I apparently should be grateful for having a surgery  that permanently changed my body that was misrepresented.  I should take solace that because it’s uncommon or unusual, it’s acceptable. I’m just insignificant collateral damage. Those thoughts weigh on me.

At one point I intended the game to be educational to allow patients to understand the surgery. To feel in their hand what was being removed. To see what had grown inside them. To be a participant in their healthcare rather than an unconscious non-person that their healthcare provider talks over or gives a lesson to their students rather than explain to person this is happening too. I’ve read a lot about shared decision making and patient engagement and I have a hard time believing it exists. This was an attempt to put myself as a patient back into a position of power where my body belonged to me.


I use to be an engaged and excited patient. I wanted to see my own uterus. I wanted to see and touch those fibroids. I wanted to excel at being a good patient. I exercised and ate right to make myself healthy as I could be for surgery. In the beginning it was fascinating story.  The scientist in me loved the idea of medicine. I had surgical fantasies.  It was gonna cure me, and my life was going to be better. I don’t have that idealistic view anymore. What I didn’t know is that surgery changes you. Sometimes for the better, other times it’s for the worse, and other times it’s a lateral switch from one form of suffering to another. Healing doesn’t take six weeks, it can take months or years. Now I’m terrified of all of that stuff and deeply distrust medicine. The entire process drove me ‘mad’. I ended up with PTSD, which in the past was known as shell shock, or in women, hysteria…

Did it work? I’m still a bit terrified of my own creation and only recently started to negotiate possibly trying a new treatment, but I still don’t believe what the doctors tell me. I’m not anti-medicine, it’s just hard to trust people who have performed the wrong surgery on me, let me be awake, basically consistently offered the wrong treatment, humiliated and shamed me,  performed the wrong tests, breached my confidentially, appended my medical records,  fed me the wrong medication, etc and generally treated me like human garbage. As I have said on a committee, I’m not a success story, you don’t get PTSD because it went well.

I made this game an open surgery, so I could redo my own surgery over and over. This terrifies me and fascinates me. My hope was that eventually I could have the choice I didn’t get or at least reprogram my brain to not think about it all the time. That maybe if I was better fantasy surgeon I wouldn’t have all the side effects I have now. If I was better imaginary doctor, I wouldn’t have been awake.  That I could finally have power over my own body and so I could finally see the thing that caused me so much suffering. And maybe if I could trust someone else do it, that maybe one day I could get the correct surgery.



I’m still unimpressed by the medical students and doctors who don’t know what a menstrual cup is and seemed to be grossed out by the idea of it.

** I didn’t get a hormonal IUD either because first I was told it would save me from surgery, I was stupid to want surgery, they wouldn’t do surgery on me, then I was told the IUD wouldn’t do anything, that I needed surgery, surgery was my only option,  and that they didn’t put IUD into childless women, and then again told I didn’t need it, and then told later I really needed to get that IUD (all of this from the same office by the surgeon and one of his residents)…. it’s hard to make a decision when you get conflicting information.


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stepper(C/N – PTSD, Medical error, helplessness)

A few thoughts on the NoJam version of Stepper. I intend to keep working on it in 2017.

In news that surprised and amazed me, I finished a game jam game about PTSD. Now this isn’t big news for most people, most people finish. I usually make a monster project that can’t be done in a weekend. The last one I finished took a month, and the other one I finished in 3 weeks. This one I ‘technically’ did in the span of weekend (A Sunday, and then a Thursday night, so about 16 hours of programming).


Iron Cat

The first game jam I did was AdHoctober through Dames Making Games in 2014 and I made Iron Cat, which was a game about PTSD that I couldn’t finish because I had PTSD and the game triggered me.  I wanted to come back to this idea of making a game that could articulate the frustration and hopeless I felt. I made a series of maps where if you stepped in the wrong place you were sent back to the beginning. An endless and torturous game of Snakes and Ladders.  This was an analogy I used a lot in therapy. It felt like if I moved that I’d always be sent back the start and my life became about not trying to move and then punishing myself for daring to move or believing that life could be better.  That I was involuntary time traveler that often was taken back to terrible memories.


Iron Cat – waiting room scene

In Iron Cat, I picked my most triggering memory. The one that set off my PTSD. It is the hardest for people to understand. I was teased in a waiting room in a fertility clinic after having the wrong tests performed on me and told that I’d need multiple surgeries and I might not ever be able to have children. It was devastating that in a vulnerable moment I experienced utter thoughtless cruelty, and humiliation that brought me back to being horribly bullied as teenager.


In Iron Cat you are sent back to that waiting room over and over, to hear part of a conversation that makes almost no sense if you have no idea where I am, what I’d just gone through, or that my health had taken a turn for the worst. The words are harmless, but the context makes them insensitive and cruel. I hate talking about this day, so instead I changed the game to talk about the 8 months of living with Heavy Menstrual Bleeding and the lead up to my surgery which I would unfortunately be awake for part of it, all of would weave itself into my PTSD. I know, it’s strange that it’s way easier for me to talk about being awake during surgery, than it is to talk about being bullied. The difference is, people believe physical pain, they don’t believe emotional pain and humiliation. Emotional pain is abstract and is somehow always my own fault.

People rarely ask “Why didn’t you yell at them?” when they heard I was awake during surgery (mostly it’s a stunned silence), but with being bullied I am constantly blamed over and over for running out of the room and crying. “Why didn’t you..?” “You should have!” I was terrified and shocked. I did complain, and all it got me was my medical records appended to make it appear they didn’t do the wrong tests, and that a doctor was there, who wasn’t.  It made me more helpless because it proved that I have no power, because by doing the right thing I was harmed even more. It snowballed into a living hell as my care became about covering several medical professionals’ reputation than about my health and almost died because of that vanity and fear of failure.



Now, I have resolved PTSD, which means my PTSD is manageable and doesn’t infiltrate my everyday life.  I am capable of talking about how I got it and how I felt. I’m still relatively heavy handed, but I still had an urge to make a game to tell my story, and get people to understand how I felt.

Serious illness is not something I was equipped to handle. As an ignorant patient I made a lot of mistakes, which one day I hope to teach other patients how to navigate this invisible labyrinth. Navigating the system felt like wandering through mazes and puzzles were I didn’t understand the rules. I was punished for not understanding or taking too long. When I thought I did get it, the rules would suddenly change and often not in my favour.  I thought I was suppose to honest. I thought healthcare practitioners were suppose to help you. I thought I was suppose to report my symptoms. I was wrong.

At times the puzzle is wandering through a clinic doctor’s circular reasoning “you need to get pregnant” or a cruel nurse’s slut shaming. It’s getting stuck in a maze that’s just so huge and overwhelming that you want to sit down and do nothing, and then find there really is only a single path that you are herded toward. That I couldn’t escape my own body and had to learn how to handle the distress and physical pain without disassociating. In the game,  certain lines of thought or avoiding symptoms send you back the beginning, like how my flash backs made me an involuntary time traveler and how my avoidance of healthcare is damaging my health.



I’d remember  things I didn’t want too. How no matter how hard I tried to not think about it, I always got sucked back into reliving all eight months. To get treated for PTSD, I had to walk to past the clinic that ruined me, and have therapy in the hospital that ignored me and then almost killed me. For twice a week for a year and half I had to worry about running into the people who hurt me.

I did once, and even though he ruined my life, there was no recognition in his face of mine. I literally ran away when I met his eyes. His life went on. I thought, my life was so insignificant that it was barely worth remembering. It was just another Thursday for him. The unfairness of it all weighed on me. How was it fair that one of the persons who ruined my life wasn’t suffering, when I was? Why didn’t he have to go to therapy and change who he was? Why didn’t he have to try to make it better? Where was this accountability I hear of?  I tried to reason out that maybe he already dealt with his guilt, that he had the right to live again,  but I couldn’t shake the feeling that he was a horrible monster that didn’t care for anyone but himself. That he and his colleagues would throw another patient like myself under the bus to protect their career. I can’t know what he thought, I can only know how other people were treated, and that clinic apparently had a bad reputation, the hospital knew this, but they still sent people there. It makes me sick to my stomach to know that they knew I’d likely be harmed, and they didn’t care.

I wanted to make a game that would want to make you give up. That would make you feel helpless and lost. That you could feel some progress, and occasionally have that progress taken away. Invisible, inconsistent and tedious rules that would eventually change. Exactly like my healthcare and the PTSD that came from it. I wanted a narrative like mine, where ‘success’ comes at a price and it isn’t a win.  Stepper is less grueling that Iron Cat, but not by much.  Ultimately, I wanted to make a game that feels unfair and unjust.

I didn’t get justice. I still have damage to my body and mind.  I had to learn how move on and live with those changes.  I had to re-learn how to think and how to be a person again. Some days are better than others, but the moral injury, and the betrayal are wounds that aren’t easily healed.

And that’s the thing. Life isn’t fair. Sometimes you don’t win.  At least in a game, you can quit with no consequences.




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