What to Say to an IBDer!

Over the weekend, I posted a link on Facebook of what not to say to someone with IBD. While I think this is great, I haven't seen any posts in other blogs of what you should say to someone with IBD, so I decided to write one. These are things people have said to me that have really helped brighten my day when I'm not feeling well.


1. "You're such a trooper." -or- "You are a strong/brave person."
These are great words to hear, because whoever is saying them is acknowledging that you are in a ton of pain, but also saying that you're tough. When someone says these words or something similar to me when I'm flaring, I glow. I realize this might sound strange to someone who's never been sick, but they are honestly some of the best words anyone has told me.


2. "You look so cute today!"

Shown: Beauty.

Ok, so don't tell me this one when I'm in pajamas and I haven't showered in several days because my joints hurt too much to get out of bed. But when you can see I made a genuine effort to look good, point it out. Sometimes, just taking a shower in the morning is so exhausting that I want to crawl back into bed, and picking out the perfect outfit and finally perfecting my cat eyes is unthinkable, but I do it anyway. When you know I have IBD and say I look cute, you are acknowledging that you know I'm in pain and went to great lengths to be this adorable. Plus, who doesn't want to hear that they look good every now and then?


3. "I'm sorry."
This one used to really bother me. Why are people sorry for something they did not do to me? Unless you gave me IBD, which is impossible, why are you apologizing? (I know, I'mm strange.) It wasn't until I started meeting other people with IBD that I finally "got it". I see my friends in so much pain, struggling to feel better, and I feel so horrible for them. I want to take away their immune system and give them one that hasn't mistaken their guts for a foreign invader. I feel sorry for them, even though I didn't give them IBD (which, again, is impossible).  Now that I understand, I don't mind when people say they are sorry. Just be careful- sometimes it can be tiring to constantly hear "I'm sorry" from others, because sympathy gets old fast.


4. Physical touch.
I used to hate touch. Loathe it. I hated touchy-feely people, and I still do. I just met you, so why should I trust you? My inflammatory bowel disease has taught me that touch is important. When I'm feel incredibly lonely in my disease, touch connects me to loved ones. As long as people ask for a hug or offer to hold my hand, I'm OK with touch. It makes me feel a little closer to humankind when I feel like a freak of nature with a million different IVs in my body or a PICC line sticking out of my arm. I don't love touch by any means now, but I don't mind as much. A well timed offer for a hug can be a million times better than any words. A word of caution, however. IBDers are generally in pain, unless they are in total remission.  Be sure not to hug too firmly, press against the stomach or hold on too long. Be mindful of the persons reaction, and loosen up if they seem to tense, whether holding their hand or hugging- you might be hurting them. Also, please try to be careful of the IV tubes, and especially PICC lines. Sometimes people get a little carried away and rip the skin around the tube. It hurts.


5. "I'm thinking about you/ praying for you."
If you've ever been through a hard time (which we all have), you'll know just how important it is to hear these words.  It's good to know you are in people's thoughts when you are sick.


6. "Can you tell me more about your IBD?"
I still feel a little shy talking about my IBD in front of others, because I never know how they are going to react to my story. Will they be disgusted? Will they roll their eyes and think I'm just whining about IBS? When someone says they are interested in learning more about my IBD, I practically fall over myself and don't know where to begin. I love pretty much all IBD-related questions, but some things I still prefer to keep more private. Go ahead and ask, but I do have boundaries, believe it or not.


7. "Where's the bathroom?"
I am adding this one only because it amuses me. When I'm out with people I know and they need to use the restroom, they turn to me and ask where the facilities are. I always know, even if I haven't been to the venue before. I have spidey sense when it comes to toilets.


8. "Are there any foods you need to avoid? What can I make that you can eat?"
I really appreciate when people ask this. It shows they are concerned about my health, and are taking the time to actually make something I can eat without getting sick(er). I usually tell people not to worry about it, and that I'll bring something or eat before hand, but this is so considerate and polite that I can never properly express my gratitude.


9. "What's the difference between IBD and IBS?"
This is an awesome question! I love, love love when people ask me questions like this, because they are taking the time to educate themselves  To anyone who's ever asked ths very important question: thank you from the bottom of my heart. You are raising your own awareness of a disease that affects one in two hundred Americans, and hopefully, if there are others around, raising their awareness, too.


10. "I love you."
Bam. That, right there. When I first began bleeding I was so deeply ashamed I didn't even tell my best friend/ boyfriend, and I tell him everything. When people tell me they love me, I am reminded that I am worthy of love, no matter how disgusting I feel or how many times I shit myself even though I'm a young adult. People who truly love me will still show it, so if you say this but don't show me love, then don't say it at all. When people who say this also show it, those three words become incredibly powerful, and stick with you. If you love me, tell me, and then show me how much you love me by continuing to be my friend, even when I sprinkle my speech with crappy puns.


11. "I'm going after that person's ass."
As IBDers, we sometimes face incredible rudeness from people who just don't have any love in their hearts and sadistically spread their filthy attitude and hate anywhere they can, because they are terrible human beings. (I feel awful for these people; it must be horrible to live like that.) When I'm too sick to defend myself and my friend or family member tells the gas station attendant where they can stick the keys to the bathroom that they won't give me, I feel proud. And also hurried, because I really need those keys.

The best thing you can do is just continue to be my friend, love and support me. Ask questions if you're curious- the worst I'll say is "I don't feel comfortable sharing that" or "I'm not sure, I'll have to ask my doctor". Oh, and also share my love for potty humor and weird stuff.

A friend comes with you to your colonoscopy to drive you home. Your best friend takes ridiculous picture of you when you're unconscious from medications and puts them on Facebook. Thanks.