I have been so busy and distracted, but I'm forcing myself to finally, formally introduce myself. I'm 28 (soon to be 29), and have had parcopresis for the past 15 years or so. I'm in the USA. I'm a male (obviously). I'm gay. And, probably the only one here on this forum, and a very small subset (if not the only one) of parcopresis suffers - Deaf. Bear with me, as this is a long read.
How did my parcopresis begin? I "lived" at a residential school for the Deaf. Part of Deaf culture is stamping feet, pounding on doors, etc. due to not being able to hear. Well, living in the dorm with other dormmates as a middle schooler was torture, for many reasons, but the real reason it was so awful was when I used our (single toilet, fully locked door with showers, for 4 people in a 'pod') bathroom, sometimes my dormmates would kick hard on the door, and pound it as well. That kept startling me, and eventually made me uncomfortable to go #2 (and even #1, sometimes), for fear of the door being pounded. You could feel it - the noise echoed all over the room (I could tell by feeling it). It was just awful.
I was also picked on and teased - typical middle school stuff. I think it somehow stuck, though, and my parcopresis stuck with me. I tried talking with a therapist in high school about my fears going #2, but that didn't really help. I had to resort to staying up late at night until, eventually, I was assured that everyone was asleep (and even then, I had to evade the dorm counselor's hourly checks). It got harder as I became a senior, as sometimes dormmates would stay up until 2-3am. Sometimes I had to resort to going in the admin building or other buildings that felt somewhat isolated, or when we were allowed out once a week to the nearby shopping center, use a gas station with a single bathroom. Sometimes I didn't go at all for 2-3 days. At home, on the weekends, I had two siblings who were 8 years younger than me, but they were still young, so it was easier waiting until they went to sleep. My parents had a hard time understand my fear, but didn't give me a hard time about it.
Moving on to college... I used my dorm suite's bathroom when my other three roommates were gone, or bigger buildings where the environment felt safe. It was a bit hard, but I managed. Transferring to another university (not because of my parcopresis, mind you!) was an improvement, as that university had plenty of isolated restrooms, including a hotel! I survived. Moving off campus after graduation about 5 years ago became harder, but I lived near campus so I could still use their toilets. Things changed, as one time, a security officer unlocked the door I was going #2 in (single bathroom in an isolated basement of a school building) and truly scared me (2013). After that, my comfort of going #2 on campus diminished.
As of right now, I use the shared bathroom me and my roommate use at our house off campus. There's 6 roommates (including me), and the toilet my roommate and I share is only for us, so I wait until my roommate is asleep (or gone, or at work) and go #2. I can go if other roommates are around, but they can't be too close to the bathroom (I can feel their feet movement, which clamps me right up). It's sometimes a challenge.
To make things a bit weirder/harder, my ritual going #2 is: turn all lights off, put my iPhone in Airplane Mode (texts I get make me 'anxious' and clamp me up - I can't really get simulation about 15-30 minutes before going #2 via text), put a shirt over my head, put a rug on the bottom of the door (to 'block' away any simulation/light/movements), and hope for the best. I go best when he (the roommate I share the toilet with) isn't around at all, and I use a night light in place of the light (I can't go with the light on) as a compromise, so he won't think it was weird that the bathroom was locked with the light out.
I'm still debating whether I should tell my roommate or not, though - on the chance he could find the locked door and low light a bit suspicious, and unlock the door from outside and then walk on me. Ugh. I hesitate in telling him because I don't want him to look at me as weird, and I don't want my anxiety to kick in, because I'd have felt like I "created a situation" - but at the same time, the 'what-if's' are bugging me. Does that make any sense?
I can go in public places ONLY in an emergency. I still have to seek out hotels, pretty much the only safe toilets I have publicly are hotel public restrooms; without much people around, and I must do the shirt-over-my-head ritual. It's getting harder for me to feel comfortable, though, because after frequenting hotels in town, security guards began giving me suspicious looks - ugh! I became a regular at several hotels, and was even confronted by security at one hotel. Needless to say, this hotel is on my blacklist. I clamp up a bit more now compared to before going in public, especially as *so far, knock on wood* I can go at home, if my roommate isn't there or asleep. It's a challenge, big time, and I'm so tired of dealing with it. I can't even really text people before I go #2 because I don't want to "create a situation." Sometimes, all day, I feel the need to go #2, but can't, due to circumstances such as my roommate being around, plain old anxiety, or texts/emails. The only (as of now) guaranteed safe spots would be when NOBODY is home (and I know when my roommates will be back home), in a hotel room (paid for, preferably with the toilet back end 'isolated' to a wall towards the room, not the hall or the toilet on the other side, as sometimes same-time flushes shake the toilet, an instant clamper), or in an isolated toilet heaven where I can teleport myself away from people (I wish!).
Wow, I know this has been a MOUTHFUL, or better yet, a wall of text! If you're still with me, thanks for your patience! I really, really, really hope this forum will continue to exist, as it has became sadly dead over the past couple years. I really think we should have a Facebook group set up where there's better, more instant collaboration.
Do you have any advice on what I should do re: my roommate? Any questions or thoughts are welcome. I hope people will respond; I've seen SO many posts where I completely agree and can relate. I'm so glad I'm not the only one! I first learned and identified myself as having parcopresis about 1 1/2 years ago. It's been a journey, that's for sure!
-Andrew
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