Hi there! Me again! I had planned on making an entirely different post, on an entirely different subject- up until about three minutes ago. I saw a post from a woman on one of the Ileostomy support groups I’m in, and oh boy did it anger me! She stated that one of her “friends” had accidentally texted her talking smack about her and her disease, which is Crohn’s. If there’s one thing I cannot stand, it’s when people say that those with Crohn’s are just faking it. So sit down and hold on to your skivvies while I do some educating and questioning those who seem to know so much about Crohn’s and those who “fake” it. I’m not going to apologize for language either, because this shit irks me.
First of all, I have a question. Can you describe to me, in full detail, what the HELL am invisible/internal disease looks like on the outside, to those who are not practiced in Gasteroenterolgy (or whatever internal speciality is needed)? Because I’m pretty sure that on the outside, we look just like you (except sometimes we have scars on our stomachs from surgeries, and sometimes even a bag that covers a piece of intestine and catches our bowel movements because well, it’s the only way we’re still alive). Also, who the hell are you to determine what days we can and can’t, or should and shouldn’t feel “good”? We can’t even determine that. Sure, we can fake feeling good for everyone else’s benefit. But some days, we just give up and let our bodies take over, and that’s OKAY. We don’t have to please you every day. And sure, you may ask on Tuesday the 12th if we are busy on Friday the 22nd, and we may say “no I’m free!” But then two days before we get a call from our Doctor saying “hey your lab work came in and you need to come in ASAP, does the 22nd work?” Or we may have an appointment and the day before or day of, the doctor calls us saying “hey- we need to reschedule” and then we’re free to hang out. But do not claim that we fake our diseases.
Here’s the thing. Our bodies control us, we don’t control our bodies. Trust me, I wish we could control when our organs inflame, or blood throws a clot, or potassium levels drop, or iron levels drop, or hemoglobin levels drop, or whatever else. Because the second one of those drop or swell up- we know…it makes us feel like an absolute giant pile of horse crap, sometimes bad enough for us to head to the hospital. It’s not something that’s always easily treated at home- although we wish it was as simple as your common cold or stomach bug. Heck, a simple cold turns into pneumonia in the blink of an eye for us. If you’d like to get a general idea of what it’s like with Crohn’s disease – use your imagination here for a moment. Think back to your absolute worst stomach bug, where you’d try to eat something and 30 minutes (or less) you were running to the bathroom to simultaneously have explosive diarrhea and projectile vomit…now intesify the stomach pains and burning butthole by about 50%, and THAT is the average day of a crohnie. Why wouldNew fake feeling like that? Take those pains, the nausea and vomiting and the diarrhea- now try to live a normal functioning life, like driving to work 30-45 minutes away, working a demanding job that you can’t run to the restroom every time you feel you gotta go, and deal with with difficult clients/customers..take care of children and the house and cook dinner and feed the pets and walk the dog, and so on and so forth. Sounds pretty shitty, literally, huh? Yep, it’s why a lot of people with Crohn’s disease (who aren’t in remission- these are the people I’m referencing btw), don’t work. Some are even on disability because if t weren’t for this incurable disease, we’d be working.
Touching on the disability- yes, some are on disability. Why? Because if it wasn’t for this disease, they’d be working. But- as I’ve mentioned above, this disease controls us- we don’t control it, we have ZERO control over any of it (sure we can manage it with medication- but it doesn’t work for everyone). Some people don’t work, and don’t have disability. Why? They don’t qualify. Why? They are young and haven’t worked enough prior to needing the disability. How fucked up is that? Someone who’s simply overweight (no underlying health issues either) can get disability because they don’t want to work, exercise or eat healthy, but someone who’s actually sick and can’t work because they are sick and in the hospital (and have been let go from jobs before due to being sick too much and being in the hospital too much), can’t get disability. Yes, I know this overweight person has no health issues other than being obese due to personal choices, because I know the person. The system is seriously so messed up, but I won’t get into that.
Anyways, I encourage you to do research on Crohn’s disease. It’s an auto-immune disease, meaning our immune systems suck, and attack itself. Not cool, body. Not cool. I know I can’t wait for the day they find a cause, and a cure. If you’re someone who’s accused a friend or family member of faking their disease or symptoms, are a crohnie/chronic disease sufferer and/or have questions- please comment below or email me at firstname.lastname@example.org and I’ll be happy to answer any questions you have! I promise, I’ll be nice, and helpful! 😊
To my fellow sufferers/warriors: forget the haters, keep your chin up and fight on 💪🏻 I have faith in you. Don’t ever hesitate to reach out to me if you need someone to talk to! I promise I’m a nice person 😊😊