I had an interesting thought the other day: How and why do you condense your story?
When I tell a stranger or even someone I know about POTS and how it affects me, I always condense the story; I rarely share my entire saga of symptoms to diagnosis to now, or even how I’m doing on a daily basis. But why do I do that? Does everyone do that?
When asked, I normally say that I have a disorder that affects me in the way that whenever I sit up or stand up, my blood pressure drops and my pulse rises, making me nearly pass out. Short and simple, though we all know by now, based on reading my previous posts that there is so much more to POTS than just that.
Shortening the story still gets a basic point across, but does this negate the severity of the issue? In my opinion, yes, it sort of does, but not necessarily in a bad way. If you tell a story of a significant or severe health problem, people will often ignore what you are actually saying to them, in favor of offering to help and starting a conversation about everything you’re doing to try to “get better.” In my experience, people retain more information when the story is down-played, to an extent, so that emotion becomes less involved in the interaction and the person asking can become more informed, rather than more worried.
For example, when asked, “Hi, how are you today?” most people respond, “I’m good, how are you?” — BAM- downplayed. The proper response is not “I feel like I may keel over at any moment,” or “I probably shouldn’t be standing right now, but I’m going to stick it out anyway. How are you?” I downplay so that I don’t start a conversation about how the other person can help or what suggestions they can provide…… How do you politely say “You can’t help me, but I’ll smile and nod because no, eating a banana will not make my foot cramps go away and no, I don’t really want to sit down so please don’t make me?”
I think I downplay selfishly- I often don’t want to talk about it when I’m out at a party or with friends and family, so I say I’m fine. I’d be interested to know how many other Potsies do this, too. For the people reading this who know me- This isn’t your cue to start worrying and asking more questions and demand the truth. in fact, it is the opposite. This is just a clarification of why, when you ask, I’ll always say “I’m doing great, thanks. Yes, I’m feeling much better lately.”
So does downplaying POTS negate the severity of it? Yes, but it also takes the pressure and attention off of myself for a bit, so even though I may ultimately be hindering my ability to show people just how severe this disorder is, I’d rather write about it or discuss it on my terms than tell you when we’re out with a bunch of other people. It is a very difficult disorder to have, both physically and mentally, as I’ve shared a lot over the course of writing this blog so far, and sometimes it’s better for me to keep a bit quiet about what’s actually happening, in favor of alleviating some of the focus on my physical problems and the attention that will inevitably be directed toward me if I share what symptoms I am having that day.
I’m not advocating this course of action in any way, just sharing some of the thoughts I’ve been having recently.
If any Potsies are reading this post, let me know in the comments or via email how you handle the question, “How are you doing?” at firstname.lastname@example.org.