There is a wonderful documentary called CRAZY SEXY CANCER. As I watched, I thought to myself, “There will never be a film called CRAZY SEXY CROHN’S DISEASE.”
No one wants disease, but if you have to be sick, you want people to say, “How can I help,” not, “Oh, that’s gross.” Nobody wants an ICK disease. People always tell me that they don’t know anyone else with Crohn’s, which is probably not true. In reality, they probably know multiple people suffering in silence because they are too embarrassed to talk about their icky symptoms.
Do we know how to respond appropriately? When someone we love tells us about their illness, how can we make them feel supported, instead of embarrassed?
I was diagnosed with Crohn’s fifteen years ago. These are ten suggestions to help anyone who lives with, works with, or loves someone with Crohn’s Disease.
1. GET EDUCATED!
I did not know what Crohn’s was when I was diagnosed and am often asked, “What is Crohn’s Disease exactly?” Although we appreciate the interest and concern, don’t force us to be your teachers. We already suffer in isolation, due to our sometimes debilitating and humiliating symptoms. Please don’t make us describe our intestines, bloody diarrhea, or anal fissures.
2. GIVE US OUR OWN BATHROOM!
If at all possible, this is probably the most important suggestion I can make. Even if you need to move heaven and earth to make it happen, give us own bathroom. Is there a small powder room that can be off limits to others? Even if it’s just a toilet and utility sink in an unfinished basement, this is a gift and kindness to Crohn’s sufferers. My hero husband gave me our master bath, and for the past 15 years shared a bathroom with our children and teenagers. Think that’s not fair to the rest of the family? A Crohn’s patient may literally need to use the facilities dozens of times in one day, and urgently. Crohn’s is not for the faint of heart. Show your love, give up a powder room.
3. SHUT UP ABOUT YOUR COLONOSCOPY!
Crohn’s patients suffer a plethora of fecal samples and lab work, endoscopies, and more than their share of colonoscopies. They don’t feel sorry for your one off the year you turn 50. Also, don’t whine to us about the prep, we go through a lot, all the time. Would you complain to a woman who had a double mastectomy that you had to go for an annual mammogram? As they say in the vernacular, same difference!
4. SEX, ROMANCE, & THE ICK DISEASE
Crohn’s Disease does not lend itself to feeling sexy. If anything it turns dynamic, healthy lovers into people who may feel disgusted by our own symptoms. Bodies of Crohn’s patients rebel, making rude noises at inopportune times, producing offensive odors, and they hurt a lot. No one wants to be running the bases, and have to stop and run to the restroom. My suggestion is to discuss this openly and allow your Crohn’s sufferer, who you love, to take the lead. We know when we are in a good space, let us initiate!
5. DON’T SEND ME ARTICLES!
Please don’t send us info you find about Crohn’s, especially if it is about cures. Believe me, if a cure is found, it will be marketed and someone will make a bundle. Our doctors are fountains of pharmaceutical information and we can access our own research on diet, supplements, etc… if we so choose. We know you are only trying to help, but when you send info it can makes us feel like you don’t think we’re doing everything humanly possible to get better.
6. DON’T WORRY IF I DON’T EAT!
Please keep inviting us, but understand that we have special needs. If you want to ask about special dietary needs beforehand, that is kind, but understand that, depending on how symptomatic we are, what we can eat my change in an instant, so we hate to ask you to prepare anything special. Never say, “But I got this just for you.” That makes us have to decide between being polite or having a Crohn’s flare, and that’s not fair. No matter what we do or do not put on our plates, please don’t point it out at the table, just enjoy our company.
7. LET ME HELP IN THE KITCHEN!
We want to be with friends and family, but if we can’t eat, help us find a place to fit in, even it takes away some of the hosts duties. Allow us to help in the kitchen, clear plates, and make coffee. Don’t make a big deal about it, just thank us, and let us be a part of things.
8. LET ME FLY UNDER THE RADAR!
If we are close enough, and you really want to be kind, tell us privately that we have permission to use an upstairs bathroom should we need to, not the tiny powder room, 15 feet off the kitchen that is for your healthy guests. We don’t care if there’s laundry in the hallway, a ring around the tub, or toothpaste in the sink, we just appreciate the sensitivity.
9. LET’S GO TO A MOVIE!
Not all social events need to revolve around food. Ask your Crohn’s person what they would like to do. A few hours at a movie, museum, or park may be a much less stressful social situation for us. Make sure we scope out the restrooms upon arrival, and be patient when we need to stop.
10. STOP THE POTTY HUMOR!
In the last 2 weeks, two people have made Crohn’s jokes to me. They are people who care about me, but somehow regress to playground humor when discussing my illness. One asked how I was feeling and said, “Oh, CRAP!” for a cheap laugh. The other said, “Why can’t people with Crohn’s finish marathons? Because they have to stop at the port-a-potty every ten feet.” When I pointed out to each of these educated women that this was hurtful, they did not seem to take me seriously. Would we joke with a breast cancer patient about losing a breast, or going bald, or possibly dying? Again, same difference. If you can’t be kind, or mature, maybe you don’t care about this person as much as you think.
I hope these suggestions are helpful to Crohn’s patients and the people who love them, work with them, and just want to be better educated. We may not talk about it, wear team colors, or aggressively raise money – but please remember, someone with Crohn’s sat home and cried because they were too sick to take their children trick-or-treating. A teenager missed his own graduation because he was too ill to make it through the ceremony. A woman watched her only child get married on SKYPE, because she could was too symptomatic to travel.
What I have shared may not be universal, but hopefully will give you something to consider. Thank you for allowing me to share my experience, strength, and hope. We have an ICK disease, but are still loveable and cable of loving enormously.