Hi babes! My name is Alix and I’m a ChronicBabe summer intern. I was diagnosed with Crohn’s Disease when I was nine and have spent my life jumping from treatment to treatment and learning how to overcome the shame that accompanies inflammatory bowel disease (IBD) symptoms.
Sometimes, even though usually with best intentions, friends of mine (or strangers) will ask me offensive or inappropriate questions about my Crohn’s. For all fellow ChronicBabes – this is for you to know you are not alone in this frustration. And for my friends and future strangers: tuck this away for reference.
WHAT I HEAR: My cousin’s friend has Crohn’s and went on X diet or Y medication. You should try it; I’m sure it will work for you.
WHAT IT MEANS TO ME: You have the best intentions and you are trying to help but you don’t know anything about my medical history or my current diet regimen. You don’t understand how offensive it is to give treatment advice when you are not my doctor.
WHAT YOU SHOULD SAY INSTEAD: My cousin’s friend has Crohn’s and finally found a diet-based treatment that worked for him/her. I know how hard it is to find something that works. I’m here if you want to vent.
WHAT I HEAR: My aunt had ulcerative colitis, too.
WHAT IT MEANS TO ME: Either your aunt is dead or dealt with a different non-chronic illness but regardless it you haven’t done your research. Because ulcerative colitis and Crohn’s are lifelong illnesses it feels awful to hear you brush it off as something that can be cured.
WHAT YOU SHOULD SAY INSTEAD: My aunt also has ulcerative colitis. (Or, in the case that she has passed away: My aunt also had ulcerative colitis. She passed away X years ago.) It’s an awful disease. I’m sorry.
WHAT I HEAR: You can’t eat gluten, lactose, or eggs? I totally understand. I’m a vegan and it’s so hard to find food sometimes.
WHAT IT MEANS TO ME: My disease-based food restriction is equal in your mind to your lifestyle choice-based food restriction, which it is not. As nice as it is to try to sympathize with someone else’s food restrictions, it is beyond frustrating when someone who chose a lifestyle diet change tries to equate it with your disease taking all the foods you love away from you.
WHAT YOU SHOULD SAY INSTEAD: You can’t eat gluten, lactose, or eggs? I don’t eat dairy or eggs either because I’m a vegan but I can’t imagine not being able to choose what to eat. It must be really hard.
WHAT I HEAR: You get such-and-such accommodation? You’re so lucky!
WHAT IT MEANS TO ME: You have no concept of how hard it is to have a chronic illness when you would trade in being healthy and not having early registration for classes or a handicapped parking pass for having a crippling lifelong illness and also having these tiny accommodations. No, I am not lucky that I get to register a week early for classes at college. I am unlucky that I have a crappy disease (literally) that forces me to adjust my class schedule around my Crohn’s. The worst thing is when people say I’m lucky that I am so thin. As fabulous as I may look, the reason I am so thin when flaring is because I can’t keep food in my body for more than 15 minutes. Not so fabulous, is it?
WHAT YOU SHOULD SAY INSTEAD: You have a handicapped parking pass/early registration for class? You deserve it. I know it’s a small consolation for all you have to go through on a daily basis but I’m glad these small things can provide a little relief.
WHAT I HEAR: I don’t get it. Just come with us to the concert and see if you like it. How do you know you don’t want to go until you get there? How can you not like concerts?!
WHAT IT MEANS TO ME: You have never experienced the panic of not knowing where the closest bathroom is. You have never been so tired that all you want to do is sleep. And you have never felt guilty about letting down your friends (and yourself) because you needed to stay in bed.
WHAT YOU SHOULD SAY INSTEAD: It’s up to how you’re feeling. If you don’t end up going and you want me to text you videos so you don’t feel like you missed anything, let me know. And of course I’ll tell you all about it tomorrow morning so you won’t feel like you missed anything.
WHAT I HEAR: You’re in a flare? I had food poisoning last month and it was the worst. There’s nothing worse than one day of food poisoning.
WHAT IT MEANS TO ME: I have failed as a friend if you don’t understand how severe my illness is. My flares are months and months of food poisoning. There is most likely nothing in your life that you can even try to compare with mine. So just don’t try.
WHAT YOU SHOULD SAY INSTEAD: I had food poisoning last month and I felt awful. I can’t imagine how hard it would be to go through that every day. If there’s anything I can bring you, like soup or a good book, let me know.
WHAT I HEAR: Your last flare was like a year ago, though, right? So you don’t have to worry about flaring right now.
WHAT IT MEANS TO ME: You haven’t done your research and I haven’t educated you enough. Flares are unpredictable, which means they can come anytime, for no reason at all. Just because I haven’t had a flare in a year doesn’t mean I can’t start one tomorrow. And just because I am just getting out of a flare doesn’t mean I’m magically safe from having another one for a certain amount of time.
WHAT YOU SHOULD SAY INSTEAD: I know you’re scared of flaring during your move to the city. There’s no way to know if you’re going to flare so all you can do is continue your treatment and try not to stress. I’ll be there helping you move in.
WHAT I HEAR: It could be worse! At least you’re able to do such-and-such things. I have a friend who has it much worse.
WHAT IT MEANS TO ME: You just don’t get it, do you? Of course it could be worse. But when I’m sitting in the bathroom shaking and crying, losing ounces of blood at a time, it doesn’t make me feel better to know it could be worse.
WHAT YOU SHOULD SAY INSTEAD: This sucks so hard and I want you to know you’re allowed to cry and feel hopeless. I love you and I’m here for you.
Post guest-written by Alix Kramer, ChronicBabe intern and a proud ChronicBabe. All photos by Alix Kramer.