I was diagnosed with ulcerative colitis in 2005. My diagnosis was changed to Crohn’s disease in 2012. If you know me now, you probably think of me as the girl who never shuts up about my disease.
Ask me. Ask me. Pretty please ask me. I’ll tell you ALL about my disease. Promise.
However, if you knew me in college, when I was diagnosed, you might have known I had this thing called ulcerative colitis, I’d missed a few weeks of school, and sometimes I missed class. Maybe you noticed that I didn’t always go out on the weekends. If you were on the RA staff with me, I may have asked you to trade shifts once or twice. That’s it.
In college, there were no “Ask Me” shirts on this body. Even if I’d known about them, I wouldn’t have worn one.
I’m glad I waited so long.
In the early days, I was mourning. I was in no position to help anybody else or be a good source of information. I was too busy doing all kinds of other very important things. And no, I’m not saying “very important” all tongue-in-cheek. For me, all of these things were important parts of the process and my IBD journey.
I was struggling with my body image. I’d lost so much weight before I was diagnosed, only to go up three sizes in a matter of weeks on Prednisone. I spent time crying in dressing rooms, my dorm room, and my parents house about how “big” I was and “Why does my body haaaaaaaate me?” I was going on shopping trip after shopping trip with my patient mother while I tried to find clothes that made me feel slightly better about my puffy face and breakouts.
I was adjusting to my medications. I had such bad reactions to Prednisone at first that I spent my mornings trying to eat things that I didn’t want to eat, just so I could avoid throwing up the drug. I spent over an hour in my “breakfast, a little bit of medication, more breakfast, a little more of my medication, repeat” routine. I had to move my 8:00 am class in my schedule to give me more time in the morning for this.
Just a few of the many.
I was learning. At first, I didn’t understand the severity of Inflammatory Bowel Disease. I was learning, reading about the diseases, and learning about other people who had them and were still kicking butt at life. I had a lot to learn before I was ready to start talking about it and answering questions.
Basically, I was coping. I think learning to live a normal life with IBD, learning about the disease, and overcoming the initial grieving process were important steps before I began speaking out. I wouldn’t have been helpful to anyone if I was crying about my fat face and throwing up Prednisone. I just wasn’t ready yet.
Sure, I still have bad days. I still struggle with my body image sometimes. I still become embarrassed sometimes after I have an accident. But I still don’t talk about those things in the moment. I wait, process them, and then I share about it. I truly believe you have to help yourself and take care of yourself before you can help or educate others.
What about you? If you have IBD, did you take a while before you shared your story? If you don’t, is there something else you waited to talk about?
If you enjoyed this article, please consider sharing it!
Opening up to family or friends is much easier but opening up to people at work has always been my biggest challenge. I still struggle with telling people, though Dr. Oz sort of outed me I suppose, because I’m never sure how much information to share.
Jen @ Such a Funny Fat recently posted..Half way to another goal
All of it was hard for me, at first. Even friends. Work was a battle, too, when I was teaching. Now, forget it. Everyone knows.
As far as how much to share, I have a little “elevator speech” that I give, and then I let people know I am open to answering any questions they have. I’ll have to post about that little speech one of these days.
It took me a while to get to this point where I will talk about my guts with anyone, and people like you helped me get here. I admire you because you share the good and the bad of living with IBD, and your courage strikes me as realistic. If people come across as absolutely fearless, I can’t relate to them at all. I still have serious self-esteem issues, but because I took the time to cope, learn, and process, I am better equipped to serve others. You did such a good job of putting the stages of this journey into words. Oh, and regarding body image: weight fluctuations are ridiculous. I have sizes 0-8 pants and bra sizes AA-DD. God bless our patient mothers who took us shopping when looking in the mirror could make us cry!
Thank you for your kind words. I try to be real, but helpful-real. I don’t like to write about things until I have perspective. Sometimes I think posts that are too “in the moment” almost come across as whiny. Since my audience is both people with IBD and people who run, I want to be careful about what I’m projecting of our community. Nobody likes a bunch of whiners.
YES. I think I had 0s – 6s at one point, and my boobs changed like crazy. Insane. My parents are saints for dealing with me.
This year I started my blog on Endometriosis. I think that when I was first diagnosed, I was less mourning and more confused. I thought endo was just pain, and I didn’t understand why I was increasingly more tired, weaker, unable to concentrate, emotional, and sometimes I couldn’t even get my brain to work well enough to speak. It took years to slowly find out for each symptom – “It’s endo, it’s endo, oh, and that’s endo too.” Then it took a while to learn what WASN’T endo. Like when I had a fever of 102 for a whole week – Helloooo, not endo! Try pneumonia! It’s a big balancing act of figuring out what you need to go to the doctor for and what’s just endo. Even now I probably find out one new thing about endo a week – I’ve just started blogging about it. Maybe it’ll speed up someone else’s figuring-it-out process.
I really loved this post. I’ve felt all those same things, but sort of in a different order. I think it took a while to figure out all that endo implied. It took a while to experience all the kinds of bad days, and all the embarrassing moments. Then slowly, my image of myself got worse and worse. I’ll never have kids, I can’t have sex, I can’t even run a mile! Whaaa whaa whaa until I started realizing I can do ANYTHING, it’s just going to be really, really hard. Anyway, I’m sure my post is getting TMI! But it’s been on my mind a lot lately and I’m glad you wrote about it.
This week is “love your body week” at my university, and aside from really really NOT wanting to see hairy fat guys in their underwear practicing self-acceptance (I mean, love yourself, but geeze get a room!) I always get this irrational urge to grab one of them and say “I CAN’T LOVE MY BODY, OKAY?! DOES YOURS ATTACK YOU EVERY SECOND OF EVERY DAY??? DOES IT????” and just shake them until I feel better. But I don’t imagine I ever would.
I don’t think I’ll ever really accept my body. I can accept my illness, my situation, life’s difficulties, and I feel like I can prevail. I think I’m kind of pretty. But I hate my body.
Sorry for the novel! Stopping now! Your post was just so thought-provoking.
Rachel Meeks recently posted..ONLY FOUR DAYS LEFT
Thanks for the comment — I’m glad I sparked some thoughts!
But I do hope that you come to love/accept your body. Mine attacks itself, too. I’ll admit that sometimes I have, “OMG stupid body, can’t you knock it off?” moments. But for the most part, I appreciate the things I CAN do. This body has run 4 marathons and many half marathons. It helps me cook, love, read, blog, make friends, laugh and enjoy life. It may run, swim, and bike slower than most. It may kick it’s own ass sometimes. But it’s mine, and it’s the only one I have. And I love it.
That is a fantastic response. And for the first time, I think I really can see a glimpse of the possibility of loving this old body. Your attitude is truly inspiring.
Rachel Meeks recently posted..Bad Weird Feeling
[...] about my Crohn’s disease. I took six years to become comfortable talking about my IBD, and I waited to blog about that part of my life until I was ready. Before then, I was writing about running and my journey to [...]