Being understood is on my top ten list of desires. I’d imagine it’s pretty high on everyone’s list but for those suffering from an illness which carries so much stigma, being understood can save a life. I’m talking about being understood by the people that I do life with. Trying to describe what’s going on, even to people that accept me, is difficult enough as it is. I want to be understood on a level where the stigma melts away, that someone might know me for me and not for my behaviors.
Acceptance is not the same thing as understanding. I’m accepted by a lot of people. I’m no doctor so I couldn’t say what form(s) of treatment work best for others but I can say that in my experience, no matter what the treatment, trigger management was the key to my successes. I would love to read from others the various ways they go about explaining what the disorder is to those people and especially any success stories where they really got it. There are many aspects of the disorder, some very positive, some not so desirable, but all together make us who we are…not what we are.
Though it’s not always effective, and depends a lot on the audience, I try to reason with those I’m pleading to. I ask them “Have you ever been sad”? They of course answer “Yes”. I ask “Have you ever been really excited”? “Yes”. “Have you ever been so sad that you questioned whether life is worth living”? I say “I experience all the same things you do, I feel, I hurt, I laugh, I love, get angry”. Everything about my disorder comes from normal things that normal people do, feel, experience every single day of their lives. So why am I different? Why is it “disorderly”? Why am I shackled to a label that everyone can read but no one seemingly comprehend?
Imagine your emotions have a set of dials, not unlike those on a radio. Something good happens and a dial turns gradually to the right. You can even turn your dial all the way up when you experience something powerfully good, like winning the lottery. When you get the tax bill for the lottery money the dial turns back to the left, you’re still happy, but not as happy, somewhat mixed but you get the analogy. You lose a loved one and the dial goes all the way left and you just can’t create the energy to move it up to the right again.
For me, I have the same dial set, but the dial is broken. Ever had an old radio, as a kid maybe? Basically had two dials. One volume and one tuner. Ever tried to adjust the volume on a radio with a malfunctioning dial? The radio is tuned to the station you want. Your favorite song comes on and you reach for the knob to increase the volume. Even though turning the dial gradually, the volume spikes up and down, high and low. You keep turning gently until you get past the uncontrollable spikes, until you find the right volume. Finally you find, it. There’s a good balance of volume that’s appropriate for your favorite song. Naturally, the song ends and a new song plays. You reach for the knob to turn it down. Peaks of loud volume followed by low volume (or silence) as the thing crackles and finds it’s jagged way back to low.
That’s the best way I’ve found to describe it, but it still doesn’t quite do it justice. I tell people I just want to listen to the songs of life like you do. I want to have better control over my dial so I don’t get the spikes and the crackles and the inappropriate levels. I want to hang around people that know it’s just a matter of time and he’s going to get the right volume. People that don’t mind listening to a broken radio and can appreciate that it can play the same beautiful music, sad, happy or otherwise. Then, being understood, I believe I can be given a little grace and when trying to adjust my dial I hopefully won’t get caught up in those crackles as much.
