This is for the Insensitive, Ignorant, Healthy Members of the Human Race:
It’s the fourth day of the new year, and already I’ve received more than my share of unnecessary comments from people who know I have a gastro disease & arthritis, but love to remain ignorant to the fact that I have diseases that deal with my intestines, my joints, back and vision. We are approaching the 8th year of my diagnosis and the 4th year of my advocacy. In that time I’ve gained weight, lost weight and almost died. I take daily meds and a monthly infusion. I guarantee you that I am not doing this because it’s fun. I’ve spent more time in the hospital than you have in a medical office…and yet, your statements continue to come. Almost daily. But today starts a new day. My advocacy doesn’t dictate that I should allow rudeness because you refuse to understand what it is I am going through. Yes, I love spreading awareness. But, you are aware and choose to be ignorant. So, once and for all I will answer your questions. And know that from this point on, I will no longer tolerate being teased, embarrassed or called out because of your lack of social decency and consideration. Basically…I’ll start clapping back. Our diseases are not here for amusement. I’m not sure what they are here for, but it’s not fair that I become your pincushion for ignorant jabs because you don’t understand how to be a human being.
It will only take 5 minutes. Why can’t you just stand and wash the dishes?
It is very possible for me to stand up for 5 minutes, but not for 5 minutes right now. My arthritis is autoimmune. Auto, as in automatic. I have no control over when pain will come, how long it will last and how intense it will be. There is never a time, I don’t have some sort of pain, but my pain level is on a constant spectrum. Some moments, not days, are better than others. If I am not standing or being active it’s because I need to sit down. If I need to sit down, it means that I can’t handle the amount of pain. And because my pain tolerance is extremely high now, I can tell you that you have never experienced this type of pain before in your life. Let me try to briefly describe it for you. It feels like my back is on fire from the inside out and I’m being stabbed with small knives up and down my spine. I can’t straighten up or put my weight on one side of my hip.
Didn’t you know you were gonna take a shower when you went to the bathroom?
No. Considering I don’t have a colon like you, or a good amount of bowel, regulating my output is hit and a miss. Sometimes I miss. Sometimes it’s messy.
Didn’t you already shower today? You don’t need to take another shower.
Yes, I did. Please see Answer #2. Shit happens. Literally.
There she goes! Try not to take forever in the bathroom this time!
To be honest, I try to make it out of the bathroom in a timely manner every time. But there are days I just can’t. My sphincter muscles are about as weak as your abs. Damn near non-existent. So that ability you have to just stop yourself from going doesn’t exist for me. And it’s not just the weak muscle, I have a very small container to hold poop. You’ve got about 20 feet or so of bowel road. I don’t even have half of that. So, it comes out quicker and faster than most. At the end of the day I just can’t help it. But don’t worry, in a few years you won’t be able to hold your poop or pee, so you’ll understand me completely!
Can you stop using so much toilet paper?
Unfortunately, no. And this kind of goes back to the inability to control my bathroom sessions. Sometimes it takes several wipes or there are several trips in a day. Either way, most IBD patients consume more toilet paper than the average person.
Aren’t you cured?
No. I’ve had my diseased colon removed as a part of treating my inflammatory bowel disease. My intestines suffer from inflammation whose ground zero was my colon. However, it effected my entire system and also triggered other diseases. Trust me, if I were cured, I’d be doing much more with my life. Promise!
Ugh! Okay, I get it you’re sick! You can’t….blah blah blah…OKAY! I get it!
Well, this isn’t so much a question as it is a statement I hear all the time. But it does need to be addressed. Here’s the thing, if you actually understood that I was sick all the time, then that would never leave your mouth. Neither would the other insensitive rude things that target me, regarding something that I cannot help. No one is more sick & tired of me being sick than ME! I am not asking for your pity, but just a little respect. If you could possibly understand that I am not making myself sick or enjoying any of the repercussions from being sick. When you find yourself in a situation beyond your control and vulnerable, I hope that someone treats you with a little more respect, dignity and love.
Where is this coming from? I guess just the fact that while working at a third of the energy of a normal able bodied, healthy person, I accomplish more than the average person who fixes their mouth to ask me these questions. I guess I’m just tired of being embarrassed or made fun of. Living with autoimmune diseases is hard enough. But to constantly be questioned, ridiculed, teased or made out to be lazy (and sometimes in front of my son) will no longer be tolerated. 2016 is the year of the clap back advocacy! LOL!
But in all seriousness. Let’s try to be more sensitive. Sensitive in the sense that it’s not necessary to question people’s hygiene or speak on something so personal. I can understand, not understanding a person’s situation until you have to live it. But you can be a little more sensitive to it. Especially if you consider yourself family or friend of said person.