I’ve been thinking a lot about stories. The stories we tell and the stories others tell. And how when two different people tell a story about the same thing, the two stories told are never quite the same.
I’ve been thinking about this because I’ve been reading through my hospital records.
When you’re a patient in the hospital, your chart is this big secret. I can think of a lot of reasons for this and if I worked in a hospital I wouldn’t want my patients reading their charts, either. But after the fact, after discharge, you can request a copy of that big secret. Which is what I recently needed to do. Really I just needed to know one thing from one admission, but curiosity got the better of me and I requested them all. They say that curiosity killed the cat…I always say that if I were a cat I’d be long dead for this reason.
That said, as curious as I was to read through everything, I was also a little apprehensive.
The reason reading through my hospital records has me thinking about stories is because that’s exactly what my records are. A story. A story about me. But not told by me…did I really want to read my story from someone else’s point of view? And not just a story told by someone else, but a story about some of the hardest times in my life…did I really want to read through and re-live all of that?
Like I said, I was a little apprehensive. I mean, my apprehension to curiosity ratio was probably one to ten, so not nearly apprehensive enough to stop me, but a little apprehensive still. I told you, it’s a really good thing I’m not a cat!
It turns out I needn’t have been apprehensive.
For one, reading through everything definitely did resurface a lot of memories, but not in a distressing way. In a matter of fact way. What happened, happened. There are some bad memories, but every bad memory is just that, a memory. I lived through it and now it’s the past. Plus there are positive memories, too.
And secondly, well, my chart is really boring. And I mean that in the best way possible. I find it all interesting, of course, but it’s really not very exciting. It’s all just very clinical and objective, as a chart is meant to be.
To me, though, as the person who lived through it, it feels incomplete. My chart is a clinical story as told by the clinicians. And so it’s biased.
One example…of many…is the doctor who made it clear to both me and my GI that she didn’t believe my issues were legitimate and that his treatment plan was unnecessary. I was a bit nervous to find out what she wrote in my chart, but literally all she entered was an order for a CT scan. And so my chart is incomplete. It doesn’t tell the whole story. It doesn’t tell my story. It doesn’t talk about all the times I was made to feel judged, belittled or less than.
The things that stand out the most in my memory can’t be found in my chart. But there’s another side to this.
Like the year I was in the hospital for Thanksgiving. My doctor was on call that weekend and so he popped in on his way out to say hi and then ended up staying and talking with me for close to 45 minutes. Read my records and you won’t find any mention of that, either, because he wasn’t there out of obligation, but rather out of kindness. As I said, my chart is incomplete, because it also doesn’t talk about all the times that I was treated in a way that assured me I was a person first and medical problem second.
So it goes both ways.
And even though the records feel incomplete to me, I know that medically they say what they need to say. What this has really made me realize is just how much the experience of being in the hospital has nothing to do with what gets charted.
When I’m in the hospital I don’t know what’s going on behind the scenes, but I do know how I’m made to feel. It’s the words, actions, and body language of people who work in the hospital that have the most impact. I won’t remember what my vitals were, but I will remember if it seemed like the person taking them would rather be anywhere else. I will remember if I didn’t feel comfortable ringing my call bell for fear of being a colossal nuisance. I won’t remember the exact answers to the questions I ask, but I will remember if I felt it was okay to ask them. My experience is defined by my interactions, not by what’s written in my chart.
Recognizing this, I do realize how much pressure this puts on doctors, nurses, and everyone else involved in patient care. I realize that just like patients, they’re people with thoughts and feelings and good days and bad days, and days where they really would rather be anywhere else than taking a patient’s vitals. I also realize that as a sick and scared patient, my feelings of vulnerability lead me to read more into what they say, what they do, and how they do it, and that sometimes this makes me misjudge. I understand now that even when I’m certain someone doesn’t like me, they’re probably not writing all sorts of horrible things in my chart. And even if they want to, they probably don’t have the time!
So as incomplete as my records feel to me, I’m really glad I decided to request them. I learned a lot. I have a better understanding now of how things work on the other side of the equation and I feel at peace with everything.
At the end of the day, it’s all just a story. And a fairly boring one at that. A story about me but not told by me. A story that ends with me walking out the doors of the hospital.
There’s also a story about me, told by me. And it’s here. I’m telling it as it happens. And it doesn’t have an ending.
And so, friends…
…to be continued.
9 thoughts on “A story about a story”
Hi Catherine, it was so interesting to read about the way in which your medical records prompted memories for you and how you dealt with the accompanying emotions. What would your records look like if you decided to insert your own pages alongside the clinical notes (or cross referenced to an appendix) explaining how you felt at the time – inserting all those subjective experiences from your point of view to juxtapose the human side of the story.
Sometimes when we review medical records (or any old documents like journals or legal papers), we discover new things or, with the wisdom of hindsight, we can find new significance in notes that seemed to be inconsequential at the time of writing.
I wonder whether you might make new connections between various events in your records now that you have a broader context. Are there any patterns emerging that you didn’t recognise before? Have you had any personal suspicions or insights confirmed or validated?
I would really love it if there were some magical a-ha moment for you and your team hiding in those records that could turn the tide on your condition and improve your quality of life. Doctors may be too busy dealing with the immediate situation but you may have the time to quietly and methodically analyse your records more deeply.
“Curiosity killed the cat but satisfaction brought it back!”
No big ah-ha moments. A few dimmer light bulbs. But we’ve had some ah-ha moments independent of these records and once I know more I’ll write about it 🙂
Thank you so much! I just found your blog! I have a chronic illness as well, SMA syndrome. Like yours it is a very little known illness with very big consequences. I am about the start my journey into gj tubes to save my life. You have given me hope. Thank you.
I would love for you to join us on a site for SMA awareness! We deal with every type of chronic intestinal disorder! Including all of yours! I too have Gastroparesis, as well as SMA syndrome. There are a number of SMA sites on FB, all closed groups. We all support each other, help each other, discuss new, old, upcoming treatments Drs around the world, what works what doesn’t, we vent, cry, and cheer each other on! We are warriors! Please look us up! You would be a valued member of our team!!! Seperior Mesenteric Artery Awareness SMA is the biggest group. If you join one or more great! If not, I still love what you do! You have given me hope and inspired me! Thank you so much!!!
Updating my bad spelling!! It’s Superior Mesenteric Artery Awareness SMA!! Lol
Well, you have taught me something – I saw SMA and immediately thought of Spinal Muscular Atrophy. Now I know that it can also stand for Seperior Mesenteric Artery syndrome so you have done a good job of raising awareness for me! All the best to you as you do your best with these illnesses.
Thanks for the invite. I’m not looking to join any more support groups at this time but if I ever feel the need to I will keep you guys in mind!
Hi Lori – so sorry to hear about your current health situation. It can be scary and overwhelming and frustrating, but yes, there is definitely hope! Best wishes for a smooth transition for you!
Thank you so much this spoke to me so much.
Thank you for sharing your story with us. May our God’s face shine upon as you walk out your story.