I have Crohn’s disease.
Even as I write that, I rush to add a lot of qualifiers: my case is really mild, I’m on a low-dose med. I hardly have any trouble. My nutrition is fine. I am not what you think a Crohn’s suffer looks like (especially if your mental image includes chronic diarrhea. My symptom of choice was compulsive vomiting, which for whatever reason is less embarrassing).
And once I write that, I’m desperate to qualify some more: I know I shouldn’t be complaining. Some people have things so much worse. It’s not fatal. Imagine the kids who have to suffer with this stuff when they’re so young! I would never get all woe is me over something like this. I’m not that kind of person.
I was diagnosed about two weeks ago, and went to the medical center one last time yesterday to have a CT scan done. I didn’t know much about the procedure, and I was relieved to get it over with knowing that after they took these pictures of my small intestine there would be nothing left to take pictures of, and I’d be done. My compulsive joke-cracking really rears its head in medical situations, and I was in fine form yesterday as I checked in and started pounding some barium sulfate. I was taken into another room so that they could insert the IV.
IV???? I thought in a panic. It’s not that I don’t like needles, it’s that they don’t like me. If I don’t drink a ton of water before something as simple as blood donation, my veins are undetectable. I hadn’t had a ton of water. This wasn’t a big deal. I’d been through this before. “Go straight for the hand” I told the nurse, “My veins are hard to find”. So he did. The vein in my right hand burst 30 seconds later and a blue lump formed just north of my wrist. He got someone else. Bam! My left hand vein burst.
And then it happened. I thought to myself “Oh shit I have a chronic illness. This is my life now. IVs and hospital bracelets and trying to entertain the nurses”. And I had the breakdown I had been putting off since the first time I couldn’t stop vomiting, months ago. The nurse (the second of three to take part in the six-attempt search for a vein) thought I was crying because it hurt. I felt weak. I’m not that kind of person.
I’m also not the kind of person who has a disease with a funny name. I have always been healthy, just like my parents and the rest of my family. It’s part of who I am, how they are. There is a part of me who would go back to vomiting every day, who would suffer every pain just to not have this diagnosis, to not have this label. In my crazy little head, vomiting isn’t the same as being sick.
There is a nice list of labels I have given myself, and I cling to them as if they are what make me myself. One of those is gone now, so who am I?
Still me. Because the million boxes I fit myself into aren’t who I am. In truth, I cannot define who I am. No matter how counter-cultural this may sound, the definition comes from outside me, in the eyes of the people and the God who love me. If my mom was asked who I am, she wouldn’t say “she is a healthy, independent singer with a great sense of humor”, no matter how valiantly I project those categories to the world. She would say “she is my daughter” and she would see me as more than a set of labels. Viewed through the eyes of love I become who I am: beloved.
So too in the eyes of God. Rare are the days when we can relax into God’s loving gaze. Rare are the days when we can accept that we are loved by the Love that made the universe. But the God who views each of us as precious children, who calls us by name, has made us into us, and that is who we are. Behold God beholding you…and smiling. (Anthony deMello).
The Latin term salus that in liturgical texts is translated as “salvation” more often meant “health” to the Romans. I have always viewed myself as possessing the latter. I am healthy. Even now, as I write, having taken my six anti-inflammatory pills today to keep the pain and nausea away, there is part of me that doesn’t believe there is anything really wrong with me. Yet it’s not health that saves me. It is God’s loving gaze, the glory of being created solely to be me, that in the end will be my salus.
Nothing beats a little Anthony deMello education on love. So strong, Ms. Felice. Can’t put a qualifier on you!
ADM FTW!!! Thanks kiddo. I know you’re going through something similar. You’re not alone.
I’m sorry to hear of your diagnosis — but you are right, we are more than the labels we give ourselves. When those labels fall away, we are still us.
Take it one day at a time — I hope you improve soon. You’ll be in my prayers.
Sometimes it takes something crummy to teach us what we need to know, eh? Thanks so much for your prayers, and for reading.
You, a WoW guildie of mine, my aunt, and Theo Fleury. You’re in good company. It’s good that they caught it when they did–my aunt’s about as bad as it gets. I could probably put you in touch with my guildie and my aunt, if you want.
Thanks Jen – there are a lot more people out there who have it than I would have known. I’m glad I “came out” so I could start to hear all of their stories.
Let me know if you want their emails. Fleury’s on twitter, but he’s really approachable.
This is so similar to how I felt when I got diagnosed with IC. It wasn’t me…I wasn’t a chronically ill person. Chronically ill people were weird and unsocial and complained a lot, right? Or they were old. They weren’t 24 and newly married! And if so they were all inspiring types who could take great life lessons from it. That just wasn’t me.
I think being diagnosed with a chronic illness is similar to the stages of grief. I know I definitely went through them all – denial, anger, bargaining, depression. Good luck to you! You’ll figure it out soon.
Thanks friend.Most days I feel like I am at whichever stage of grief is “whatever” (is that acceptance?) but sometimes I regress a bit.
I was the one who never got sick in my family. Even the case of chicken pox I had as a teen was the lightest ever seen (maybe 4 pox and a low grade fever for a few hours) while my brother’s was one of the worst ever.
And then in my forties, not far apart, I’m diagnosed with sleep apnea and celiac disease. I empathize. Not sure there’s much else that can be said. At least it’s diagnosed and being treated. At least, that’s how I decided to look at it. It helps.
Peace.
Thanks for your thoughts – your perspective is right: since it is treatable and being treated, I am not in such bad shape after all.
Your conclusion is tremendous. If you’ve got this within two weeks, think of what you may have in months and years. Thanks, chronic illness. 😉
I’m sorry for the reality you’ve been living with, but thankful that you’ve got something to work with. I know this doesn’t help, but I too see you as too vibrant to be “sick.” Keep it up.
Thanks Rae. I was thinking of you while planning this post. I thought a lot about one of your posts about believing that if you ate the right food nothing bad would ever happen to you. There is a part of me that has been really annoyed by this whole thing because I always took care of myself. I run half marathons and do yoga and eat veggies and whole grains. How could I have a digestive problem?