Allow Me To Clarify
It's come to my attention, quite lately, that many of those around me have no idea what SPD means and how it makes me feel. This is totally fine, again given my newish diagnosis, but coming up against these roadblocks continues to make me feel that age-old sense of isolation, dating back to my teenage misdiagnosis of Panic Disorder. Anyone who's met me for more than 10 minutes has gotten my basic SPD spiel, and those who have known me for a few months or more really get a hands-on sense of what it's like to be someone trapped under the weight of this condition - untreated, mind you - for 27 years. But apparently seeing me in the raw, wrestling with the anxiety that comes from my difficulty processing, isn't enough to get any of these facts to stick. I know people mean well, but I suppose being in the field of mental health makes me more in-tune with the needs, behaviors, attitudes, and emotions of others. When this isn't reciprocated, especially in the more critical relationships in my life, I can't help but feel frustrated.
For those of you who want a cheat-sheet, allow me to clarify:
1. I am not afraid of the dark.
This is something that people around me have mistakenly believed for as long as I can remember, attributing my increase in anxiety to the lack of daylight. The darkness is a problem because it cuts my visual processing abilities and forces me to rely on my jumbled auditory sense, which makes the world sound like a mishmosh of sounds in the daylight, let alone after dark. I have also noticed - again, since the dawn of 1983 - that I feel worse as the evening draws on, most likely due to the fact that I've spent the entire waking day fending off and failing to properly process menacing sensory input. So while darkness might hit around 4:30 pm in the winter, it is nowhere equivalent sensory-wise to say 11 pm. Do you see me shying away from those later evening activities? You can bet it's because my brain is completely fried, and I feel frayed and susceptible to a melt-down. I will place bets I'm not the only adult SPDer who can state this claim.
2. I am not avoiding you.
I haven't called? I haven't emailed? You can't seem to pin me down for an activity? It's really not about you, trust me. When external activities generate anxiety, you can bet that I can't reach any state of sensory-normalcy. Picture feeling like bugs are crawling up your arms and you want to shed your skin pretty much on a daily basis, now add life stressors (or, um, graduate school work) to the heap. Do I seem a bit jumpy? Have I not been able to call you? Wanna take a guess why?
3. I need your flexibility.
Maybe I've made what seems like a "weird" request about the time or place of an event. It's most likely because the event is at a time that is unpalatable (see #1) or the location is terrifying (something that a classmate with SPD and I talk about frequently, fear of the unknown takes a new, special twist with SPDers, because we're terrified of what sensorily awaits in an unknown location - everything from where the lights are located and how bright, how echoey the room is, how busy it'll be, what the chairs feel like. It's life's true picnic). Are you a well-wired human being? Would changing time or location make you feel ill in any physical way? If so, let's compromise. If not, please, I need your flexibility - it's not a luxury I'm afforded with this condition.
4. I need your understanding and support.
This is the bottom line, this is the fuel that keeps me ricocheting between the endless sirens and hustle and parade of people. Without the understanding and support of those who love me, I am without a lifeboat, and it's a very cold ocean. If I can't find my voice in an SPD-related situation, please help me stand up for my "quirky" needs, regardless of where that puts you in relation to others. There are very few people who must stand firm with me, but if you believe this applies to you, it comes with the territory. I promise I'm worth the work.
You want to love someone with SPD? Ask questions. Learn how difficult daily living can be. Close your eyes and imagine a world where noise and light and touch and balance are menacing, terrifying, draining forces to be reckoned with every single day. Then add the layers of your life atop of this precarious heap.
My name is Rachel, and I'm an adult living with Sensory Processing Disorder. Welcome to my world.
For those of you who want a cheat-sheet, allow me to clarify:
1. I am not afraid of the dark.
This is something that people around me have mistakenly believed for as long as I can remember, attributing my increase in anxiety to the lack of daylight. The darkness is a problem because it cuts my visual processing abilities and forces me to rely on my jumbled auditory sense, which makes the world sound like a mishmosh of sounds in the daylight, let alone after dark. I have also noticed - again, since the dawn of 1983 - that I feel worse as the evening draws on, most likely due to the fact that I've spent the entire waking day fending off and failing to properly process menacing sensory input. So while darkness might hit around 4:30 pm in the winter, it is nowhere equivalent sensory-wise to say 11 pm. Do you see me shying away from those later evening activities? You can bet it's because my brain is completely fried, and I feel frayed and susceptible to a melt-down. I will place bets I'm not the only adult SPDer who can state this claim.
2. I am not avoiding you.
I haven't called? I haven't emailed? You can't seem to pin me down for an activity? It's really not about you, trust me. When external activities generate anxiety, you can bet that I can't reach any state of sensory-normalcy. Picture feeling like bugs are crawling up your arms and you want to shed your skin pretty much on a daily basis, now add life stressors (or, um, graduate school work) to the heap. Do I seem a bit jumpy? Have I not been able to call you? Wanna take a guess why?
3. I need your flexibility.
Maybe I've made what seems like a "weird" request about the time or place of an event. It's most likely because the event is at a time that is unpalatable (see #1) or the location is terrifying (something that a classmate with SPD and I talk about frequently, fear of the unknown takes a new, special twist with SPDers, because we're terrified of what sensorily awaits in an unknown location - everything from where the lights are located and how bright, how echoey the room is, how busy it'll be, what the chairs feel like. It's life's true picnic). Are you a well-wired human being? Would changing time or location make you feel ill in any physical way? If so, let's compromise. If not, please, I need your flexibility - it's not a luxury I'm afforded with this condition.
4. I need your understanding and support.
This is the bottom line, this is the fuel that keeps me ricocheting between the endless sirens and hustle and parade of people. Without the understanding and support of those who love me, I am without a lifeboat, and it's a very cold ocean. If I can't find my voice in an SPD-related situation, please help me stand up for my "quirky" needs, regardless of where that puts you in relation to others. There are very few people who must stand firm with me, but if you believe this applies to you, it comes with the territory. I promise I'm worth the work.
You want to love someone with SPD? Ask questions. Learn how difficult daily living can be. Close your eyes and imagine a world where noise and light and touch and balance are menacing, terrifying, draining forces to be reckoned with every single day. Then add the layers of your life atop of this precarious heap.
My name is Rachel, and I'm an adult living with Sensory Processing Disorder. Welcome to my world.
You are one amazing woman. This is the best treatise, explaining everything to everyone in words that we can all understand. We will continue to work with you to make life as comfortable as we can for you.
ReplyDeleteAs always, and forever, proud to be your mother!
Thank you. Wonderfully expressed and very helpful to those who need to understand this condition.
ReplyDelete