by Lori W., patient
BOSTON, MA – When asked if I was interested in writing a blog post for OpenNotes I immediately said yes. But it wasn’t long before panic set in. “What’s a blog?” I know it sounds silly to most people, especially when almost everyone is so used to social media, but I’m not. I want this to be as organic as possible, so I’ll just give my thoughts on OpenNotes and my experience with it.
Where I get my care all the notes are open, but I want to focus on therapy because these were the first notes I got and also the ones I read most often, as I see my therapist more often than any other health professional, and he knows me best.
On the whole, I think OpenNotes has been positive for me. I use my notes as a guide for progress or lack thereof. Often I’ve forgotten what I talked about in a session, and the notes can be reminders of what was said. When first told about OpenNotes, I was excited because I thought, “Great, I finally get a chance to see what my therapist thinks of me.” I was also really curious to know if he was listening to me and if he really understood what I was saying. I have to admit, the first few times I read the notes, I was really surprised. I thought, “Gee, he really is listening!”
At first I wasn’t sure what to expect about the language in the notes. I thought the notes would be full of difficult technical/psychological terms and that I would have to spend a lot of time looking up what each word meant. But generally my notes are written in very straightforward plain English.
I learned the hard way what I should do if there’s a term I don’t understand (which I know isn’t uncommon). In this case, I remember reading the term “affect dysregulation”. I looked it up and different websites had different interpretations (well, that’s how I interpreted them) – Mood swings? Angry outbursts? Behavioral outbursts? Borderline personality disorder!!?? After reading this online, I really was confused and ended up feeling pretty badly. I know there are times when you won’t be happy with what you’ve read in your notes and that’s okay, but in this case I guess I panicked. These phrases didn’t sound like me. BUT there was one symptom on the websites that convinced me that the term might be correct: Overeating. I’ve been struggling with weight my whole life.
Gaining Confidence in My Therapist
In my next session I mentioned not understanding the term affect dysregulation. (I didn’t tell my therapist about my “research’ and how it affected me, though maybe I should have.) We talked about what affect dysregulation means, which helped, and I’ve noticed in my notes he now uses “affect management and regulation”. It was a good lesson for me. When in doubt, ask your doctor or therapist, not Wikipedia!
I will mention one time when I was afraid to read one of the notes. At one of my appointments I talked about a terrible experience where I had made a big mistake, and I worried that my therapist had written all the terrible details. When I went to my session, I told him I just couldn’t bear to read it in my notes. But he convinced me that we could read it together. I was relieved by the way he encapsulated what took place without all the embarrassing details. I was happy he suggested we read the note together. It helped me recognize and process all that happened.
One last thing, sometimes too much time passes between notes, which can be a bit frustrating, especially if I’m working on a goal. Maybe I should write a note for myself. I guess that’s something I should talk about with my therapist too.
I’ve come a long way from when I started therapy, but now that I’m writing this blog post, I see I could be speaking up even more.
That’s the point of OpenNotes – more open communication.
I like having access to my notes, and the more I open up, the easier it gets. I’m not the most outgoing person, and I struggle with issues of self-confidence/self acceptance, obesity, hearing loss, and speech impairment. Because of OpenNotes, I’ve been able to gain confidence and have participated in groups focused on how people are treated by the medical community, how hospitals can help patients feel more comfortable – not just medically, but as human beings – and how OpenNotes can be improved.
I can tell you, a few years ago I wouldn’t have believed I would be doing all the things I am doing today. I would have dismissed the idea outright; it would have been too frightening. It is still scary for me, but somehow I manage to push through, and when it is all said and done everything is okay, nothing has fallen apart for me or my therapist. It’s funny how something can turn into such a positive impact on one’s life.
Well, that’s if from me. I’m not sure if I did a blog or not, but thank you for letting me share my thoughts on OpenNotes.