Every time I hear this phrase, I can reasonably guess the speaker's experienced something unpleasant, unfair, unfortunate...you get the idea. I attempt to show some empathy for the situation, but out of irritation usually end up thinking "If you only knew?!"
Living with a disability, I'd like to think I've done my best to demonstrate what I can do, not what I can't. I do my best to not let life get or keep me down, which can bring others down. If people have questions, I answer them to the best of my ability...my thinking is, knowledge leads to understanding which in turn leads...hopefully to acceptance, therefore no subject's off limits. This was especially helpful in school and I felt very accepted and loved by most, if not all my classmates. They pretty much knew everything. They knew why I had an aide(a lady who helped me to classes safely; assist with standing, sitting and personal care needs). They knew I catheterized myself, therefore could easily pee in anything: vinyl glove, pop can/bottle...wait maybe that was just an open joke between the aide and I? I tried to have a sense of humor about a lot however, I don't think they fully understood the difficulty and embarrassment I live with having bowel/bladder incontinence(lack of control) and constipation. Many times I had to be excused from classes or extracurricular activities to change wet or soiled clothes after what I called a "problem or accident." If I was in class I discreetly mentioned I needed my aide to come get me. Once she did, I hoped I'd make it out of the room without any bad smells or puddles left behind. Sometimes, I think my friends could tell I was embarrassed so they tried to make me feel better. I graduated and tried to not let it get too me.
As I got older the issue persisted, but I usually had someone nearby to assist with clean up so I didn't really feel the burden until I entered the workforce. I noticed "accidents" occurred more frequently, and considering I didn't have an aide I was unsure how to handle the situation. I would quietly call mom, arrange for her to come, help me clean up and get me back to work without anyone really knowing she was there or why. My supervisor did find out and was hurt that I didn't feel comfortable enough to ask her for help. Appreciating her support, from then on I asked her. Things seemed to go okay until she wasn't there and I asked the Executive Assistant to the HR Director! The next thing I knew I was in a meeting with the HR Director, the Company Lawyer and my supervisor to discuss the problem and what to do about it. From that meeting, I decided to try wearing another kind of padding that hopefully I could change myself when needed. That hardly worked. I felt bitter and betrayed. Not long after, I resigned.
Thankfully, I was working a part-time weekend job where I felt accepted. I knew I wouldn't have the same difficulty. Ironically, I didn't seem to be experiencing stomach problems as often either. It seemed that they only happened every couple months or so, I really couldn't figure out why but also didn't really give it a lot of thought either.
In the early/mid 2000s, I noticed things seemed to get worse. Bowel issues were more frequent and I couldn't really understand why. Wrong food? Too much/little mobility or exercise? Sometimes, I'd have 2 or 3 problems in a day. I never knew if I was gonna deal with rocks, paste or a flood. These episodes have made me so sick and weak I often end up sleeping for an hour or so after. I did what I could to not allow it to affect employment. Many times, I'd actually be having an accident On The Way to work. I didn't know what else to do but show up, sit in it for a while then call for a break. While in the bathroom, I would act as if I'd just discovered the problem, say I needed to go home then leave. A couple times, I tried returning to work but ended up sick again so I'd go home and stay home for the night. After that, I'd just call off if I had even the slightest indication I was gonna have a problem. I only shared my feelings about this with a couple co-workers who were real friends. One day while talking and feeling not so down about the situation I said "what can ya say...shit happens." Kinda felt good to attempt humor about it.
I made every effort to find out what could be the problem. I met with a GI Dr. who tested me for Celiac Disease; Chrones Disease; Diverticulitis. All came back negative. What I did learn was I have an enlarged colon. The Dr. said my body just keeps storing waste until it's ready to release it. We discussed solutions both medicinal and dietary that may help address the incontinence/constipation and hopefully reduce problems. That only worked for so long. Living independently is awesome in so many ways, but when a bowel issue happens...not so much. There have been plenty of times recently where I've been alone and had to clean up huge messes. Often times, I can't see how much and what kinda(rocks,paste) I'm dealing with so I end up smearing it all over the bed and can't find clean space to clean myself up. The last time I was in this situation I kept thinking "what employer would want you?" What Guy would want to Date or Marry you? I felt a desperation and hopelessness I'd never known. I didn't know where to turn.
