Crohn's and Colitis Awareness Week

Hooray! It's apparently Crohn's and Colitis Awareness Week yet again. Last year I wrote about the experience of being a patient with a chronic condition. Today in honor of #PurpleFriday, I'll show off my newly dyed hairs. 

And I'll also let you in on a short list of things not to say to people living with Crohn's or Colitis. Many of these things apply for other illnesses as well. We know you mean well when you say these things, but often it comes across poorly. A special thanks to some fellow chronies, Martha and Shannon, who helped me to come up with the list. 

1. "You look great! You've lost weight!"<---this one is my absolute least favorite thing to hear. The converse is true also after I've been taking steroids and quickly put on some lbs. after rage eating everything in the vicinity. Trust me, you do not want diet secrets from me. 
• Bottom line: don't comment on anyone's weight. Really, just don't do it. It's almost always a bad idea, but especially not so nice to do to someone with bowel issues. 
• Also a close runner up: "You're so lucky you can eat anything and stay thin." Malnourishment is a real concern in the middle of a flare up. Often force feeding high-calorie foods is required, although I would really rather not put anything into my body at all. 
2. "Is it okay for you to eat that?"/"I bet if you cut out dairy/gluten/meat/GMOs out of your diet you'd be fine." Each person's disease is different. And each day is different. There are certainly foods I stay away from (popcorn and seeds of any kind) but we all are our own experts on the disease and how we react to foods. 
3. "You don't look sick."/ "You seemed okay last week." This one is big. And not just for IBD sufferers. Crohn's and colitis are part of a group of diseases lovingly called "invisible illnesses" because you really can't tell from the outside what's going on. This includes multiple sclerosis, lupus, fibromyalgia, chronic fatigue syndrome, depression, migraines, Lyme disease, PCOS, endometriosis, etc. I'm really putting forth an effort here to appear normal. It's quite possible I spent the better part of my day just getting ready to go into public. Some days are harder than others though--fake it 'til you make it (and then pay for it later with fatigue). 
4. "My friend/cousin/random acquaintance was cured by essential oils/yoga/meditation/deep breathing/vitamins, you should do that."/"Just take Tums or Pepto!" I know you're just trying to help. But I promise you, I've tried everything. I swear to you, that no one enjoys swallowing handfuls of pills less than I do. And neither Tums nor Pepto is going to help me any. Also, as of right now, there's no cure. 
5. "Why are you so tired? You didn't do anything today."/"If you're tired just take a nap or drink some caffeine!" Oh the fatigue. The combination of medication, your own body trying to destroy itself, and the desire to just be normal really does add up some days. Although it sounds so ridiculous, there are days where I have to nap after taking a shower because I'm already exhausted. And then I feel guilty about being fatigued, so then I overdo it and thus the fatigue cycle continues. This was pretty much all of medical school on repeat. P.S. Adding caffeine is really the worst thing to do for gut stuff...it definitely doesn't make the problem any better. 
6. "It's just Crohn's. It's not like it's cancer and going to kill you." I've never personally had this one, but I can resonate with why it would be frustrating. And truthfully, when you're really sick there are moments when you wish it would just kill you already because living every day for the rest of your life with it sounds like the worst hell of all. But I also want to point out that the side effects of the medications and the disease are actually very real and can be life threatening. 

And here's a list of things to say or do instead.

• "You look healthier than the last time I saw you. Are you on the road to better health?" Make it not about size, but on health and well-being. Or even better...don't comment on outward appearances at all. Just tell us you're happy to see us!
• "I'd like to hang out. You choose the venue--we don't have to eat/go for coffee if you'd prefer not to." The disease is isolating enough as is. We need you to still stick around and invite us to things--even if we've missed the past 10 things because we were ill--we won't feel pressured, just reassured that you're still there for us and supporting us. 
• "I know you're in the middle of a flare, can I come over and do XYZ task for you (load the dishwasher, vacuum, go grocery shopping)." Make the offer specific and recognize that we may not have the energy to hang out for hours afterward, but that we sincerely do appreciate the help. 

I promise you that we are not expecting perfection, but even a little bit goes a long way. But most importantly, if it sounds like you're policing my body/food intake/bathroom experiences, please don't (unless I'm an infant, in which case please continue to do so). Just ask how you can better support me instead!