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.
Poppin’ pills.
1.
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.
2.
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.
My breakfast of gluten-free waffles.
3.
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.
4.
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.
5.
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.
Yes, this is a photo of me in my favorite room of the house.
6.
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.
7.
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.
8.
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.
Great article, Alix! Thank you so much for giving such concrete examples of supportive things to say. I’ve bookmarked this for future reference and to send to people who could use some education on the topic 🙂
yay, louise! i love that you bookmarked alix’s piece. isn’t she great? hugs hugs!
Thanks Louise! You’re my first fan 🙂 I’m so glad this can help you and your friends who might need reminders on what to say (we all have them)!
OH wow! Well done!! ?? I don’t have Crohn’s, I have Gastroparesis. Very different diseases, but these responses are fabulously interchangeable between the two! Great job!!! Hope you are as well as possible today!
Thank you! It’s both wonderful and awful that so many diseases that are completely different still run into these phrasing issues!
And congrats on the internship!!!
My sister (Rachel Cincotta) sent this to me! I was diagnosed with ulcerative colitis when I was 16 (I’m 27 now) and just spent the past year with an ostomy bag after having my large intestine removed. Now I have a j pouch, but still have a lot of the same issues (without the pain though, luckily). This article is awesome! Love what you’re doing to spread the awareness!
Hi Briana! I remember meeting you when I was really, really young. I’m so glad Rachel forwarded this onto you! I’ll have to pick your brain sometime in the future about the ostomy bag and j pouch because I know I’m approaching at least one of those things… And I’m so glad you liked the article!
Well you can always get in touch – I’m happy to answer any questions!
I understand you completely. I’ve been battling Crohns for over 40 yesrs. I’ve had over 60 surgeries. My list would be very similar to yours but different, we (Crohns Disease or IBS), go through many of the same symptoms but like with any disease or chronic illness there’s a measurable difference of severity from one person to another. In my case I’ve become a very good actress so a lot of time family, friends think I’m doing well even though I’m not & even strangers think nothing is wrong with me as when I can drive & park in handicapped spaces I get dirty looks. I’m totally with you regarding “friends” researching & educating their selves before commenting on the disease. I’ve had “friends” who tell me that a family member or friend who has Crohns/IBS & all they do is take meds & they’re fine or had just 1 surgery & they’re fine, etc. My reply is I wish that is all I was hit with. In my case I was close to death several times. My biggest pet peeve is the comment you look fine…if I simply took my close off I wouldn’t have to say a word. But really, my true friends have googled it & they don’t need to tell me they’ve researched it because I can tell they have by the questions they ask & by the things they do for me like stop by with soup or help with house cleaning & driving me to get groceries or to doc appointments as I’m on too much narcotics to drive safely myself sometimes. God bless you & continue to be strong.
Thank you for your kind words. You have been through so much and are an inspiration for pushing through illness. Your true friends who help you out seem absolutely wonderful and are definitely people to keep close.
Thank you, Alix!! I love how simple and direct you were…and that you showed people the healthy supportive way of communicating! Absolutely, love that you have a favorite bathroom!! I don’t have Crohns disease, I do have mild to moderate IBS that’s part of my Fibromylagia. Along, leaky gut syndrome, hypothyroidism, and… well, the other major one is PTSD (technically, a disorder not a disease, but just as chronic and life crippling).
The one that comes to mind that makes me the maddest is “You’re so lucky you got to take a nap, I never get any naps. It’s not fair” or they’re pissed as hell and angry/resentful towards me, because they’re tired and they didn’t get to have a power nap. Explaining that I literally will not be able to function for the next 3 to 5 hours if I don’t. Sometimes it’s more of an… at least stop in a semi relaxed position and close my eyes for 10 minutes. I think of how envious I can feel towards them that no matter how tired they are, they can keep pushing themselves. If I do, my legs will give out from under me, my body starts shutting down and every moved takes me 3 to 10 times longer to do and gets hard with each movement (that’s without mentioning that I’m slower than them anyway, again because I’m ill and I have to take care of myself). Thanks for letting get a of my Grrrs 🙂 Keep it up, Warrior!!!
I’m so glad you found the article relatable! (But obviously not glad that you have had people say these things to you!) I totally have run into the nap thing before, very much along the lines of #4. In high school I would be able to miss periods to go to the nurse’s office and nap and my friends and classmates would be SO jealous of me. I would try to explain that I needed to sleep at the nurse or else I’d sleep on my desk in class and they never seemed to get it… Sigh. That’s always the way.
Thank you so much for giving specific examples of compassionate responses to chronic disease. I find this really helpful because even though I have a chronic illness (ME/CFIDS) … I don’t have ALL chronic illnesses, and what may be helpful for my situation may not relate much to another person’s. Several of my friends live with other health problems, and there are times when I find myself at a complete loss for what to say to be supportive. Even though I try to educate myself about their illnesses and ask them questions when I want to understand better. Half the time I trip over my words, because I have a very hard time articulating myself on the spot due to severe cognitive problems. Sometimes I end up saying the most absurd things to other ChronicBabes and I am so embarassed by myself!
In a strange way, though, my own difficulty with knowing when to listen, when to speak, how to express compassion verbally and non-verbally, etc. gives me the opportunity to understand where other people are coming from when they say things to me about my illness that cause me to feel anger or frustration reflexively. I’m not good at doing this yet, but I think moments like these present a chance for me to open my heart further, to feel compassion for the person who has spoken to me, and try to extend to them patience and acceptance, and to open myself to their exerience. Because the truth is, I’m not sure that I understand what it is like to live in their skin any more than they know what it is to live in mine. But I can try. And that effort, trying to understand others, to actually imagine their experience, is a very healing process for me.
That’s wonderful that you are working so hard to be compassionate to others. Just the fact that you educate yourself on your friends’ disabilities is huge proof that you care, even if you may not be able to articulate it in the best way.
#3 OMG every f’ing time. You are a vegan, boo hoo you have a hard time going out for supper, dude you CHOOSE that!
It is so NOT the same as having CD. Yes if I am not feeling well I can be super picky about where I go to eat, but that is a choice I make because I don’t want to be hanging out in pain all night/tomorrow/the next day or be in the hospital. Being sick is not a lifestyle choice I willingly make, so no it is NOT the same as your weirdo diet, you person with a healthy digestive system, you can cheat, I cannot.
It’s my biggest pet peeve!
I am so incredibly happy to have found this article. I am 22 and was recently diagnosed with ulcerative colitis and it has been a difficult last few months. On top of my symptoms, one of my biggest struggles has been getting friends/ family to understand what it is like to suffer from a chronic illness. I think it is a big misconception that just because we appear to be feeling okay, that everything is fine and we are not sick. Explaining to my friends why I can’t do this or do that because 1) I am suffering from a flare or 2) I am completely exhausted is very difficult. You make some great points in this article and I have unfortunately heard many of these statements. Thanks so much for this.
I’m so happy this article could help you a little bit! I found that the more open I am with my friends the more they’ll understand. It took me 12 years to talk openly about my symptoms to close friends and family but it allows them to be able to be more empathetic.
Thank you so much for this! My wife Has had Crohns for the last 10 years and everything you said is so true. No one understands or gets it I am amazed by her siblings and even her own Mother. They dont even get in touch with her it crushes her and drives me crazy. I am so sad for her and anyone with Crohns or a chronic disease. All she wants is someone to just stop by like you said pick up groceries and come and talk. Hold her hand just say I am here for you. Thank you again your words mean a lot to her and I. Good luck and hopefully everyday is a little better for you. Or at least more bearable, and you get some relief.
Pat
You write like you feel good when people pity you. Like the must treat you differently. Fucking safespace