So I’ve gotten some emails lately asking different questions that all sort of end up in the same place: people want to know how I was able to lock down a boyfriend who is so willing to accept all of the unending drama and grossness that comes with my disease.
Now, a little disclaimer here before I get started- I love my boyfriend. He is a very good person, and I’m grateful for so many things about him. And yes, when I first tentatively revealed aspects of my sickness to him, I was relieved by his acceptance and support. But should I be? I mean, is that the correct response on my part? A nice guy shows me affection and I feel relieved? Disease or no disease, that doesn’t seem right. And the more I have been mulling over the different ways to answer this question (how do I make someone love me even though my disease is gross?) the more frustrated I have grown that this is something that young girls feel they have to worry about.
My disease is a handful. It’s scary and stressful and frequently affects the day-to-day life of both Jon (my boyfriend) and I. But it in no way makes me less lovable. This was an important realization for me- I don’t want someone to date me “despite” my terribly inconvenient illness. If someone truly cares about me, that shouldn’t have much of an effect at all.
And truthfully, it hasn’t. Although I will say that in many ways, before we became a couple, it made us closer friends. In the early days of my diagnosis, along with several other dedicated people, Jon was always there for me when I needed him. I have a distinct memory of texting him once, looking for reassurance and comfort, when I was fresh out of a surgery. Nights can get very lonely in a hospital room. I was scared and drugged and by myself, and he stayed up all night with me when no one else would (looking at you, Mom.) I remember feeling like maybe he was the only other person in the world with me. Not so much in a romantic way, but more of a paranoid, where-am-I kind of way. But still, it was nice.
I must admit, though, once I started to really develop a crush on him I did my best to keep a lot of the nitty-gritty details of my sickness a secret. After all, there’s a difference between the way you might talk to your best friend and the way you might talk to your friend who you think is really cute, especially when it concerns your bowels. I continued texting him throughout my recovery in a very dramatic and vague way that conveyed all of my pain but none of my nastiness. I was able to keep this up for several weeks into the semester, until one night when I went to meet a group of my friends at the park. A close pal of mine, Luis, who knew the whole story of my illness, ran over and greeted me cheerfully: “Hey, how’s your butt?” Jon, to his credit, pretended not to hear.
I tried to play it off- Luis was (and is) just weird enough that Jon might have actually believed that “how’s your butt?” could be a casual greeting on his part. Half a year later, on my birthday, I would receive a card from Jon with a picture of that same park and a note that read:
“This is the place where I first heard anything relating to your anus. Yes, your anus. It was the first moment that I truly saw your vulnerability with your illness. It was the beginning of a deeper relationship between me and your butt. And you, of course.”
So I hadn’t been as stealthy as I thought that night at the park. Ultimately, though, it didn’t matter. Over time I filled in all the blanks for him about what Crohn’s is, what parts of the body it affects, how it makes me feel and what I have to be careful of because of it. I assume he googled the rest. But the things Jon writes about Crohn’s in the card isn’t the important part, not really. It’s the last bit, where he says “And you, of course.” It’s that he makes it a joke. He makes it easy. He lets me know how little it all matters in the larger picture of who we are to each other. He isn’t dating Crohn’s Disease- just me. Of course.
Jon does a lot for me, stuff that I know he wouldn’t do for just anyone. Stuff I know that not just anyone would be willing to do. In order to get better I have to get two shots, one in each leg, once a month at home. Although I have been on this treatment for over a year now I am still too much of a weenie to administer the shots myself, so every month Jon will scrub his hands, pinch the fatty part of my thigh, and stick a needle into my leg at just the right angle. The whole process takes maybe twenty minutes because there’s so much medicine in the syringe. I will usually hide my face in my hands as he patiently asks me mundane questions about mundane things to distract me from the pain. Sometimes this doesn’t work- once it stung so badly that my reflexes took over and I smacked him across the head, mid-puncture. He didn’t waver.
He’s very attentive when it comes to the way I feel. He’ll rub my back when I ask him to and leave me alone when I ask him to- an important distinction. There are times that I’ve made him pat me on the back until I burped (the way you might do with an infant) or forced him to go with me to doctor’s appointments just to have someone to chat with in the waiting room. When we’re eating out and I’m too embarrassed to interrogate the waiter about the menu he will carefully explain my food allergies to make sure I get something to eat. Most importantly, he lets me complain. About anything and always.
Perhaps the most supportive thing about Jon when it comes to my Crohn’s Disease is not something that he does, but rather something that he’s never done. At any point, during times of complaint or times of true panic, he has never said “This is too much.” Even when I am crying, shouting those very words. Even when it’s all too much for me, he is there.
This is not because he is some saint making a huge sacrifice by dating me. I used to think that way, I used to feel myself apologizing for my Crohn’s in everything I did, but that’s a terrible way to live. And it’s just not the truth. Jon is dating me because I’m awesome and he’s awesome, and we like each other. That’s it. There’s no big secret.
So… to answer all the questions of “How do I find a boyfriend who will love me despite my sickness?”
Here’s what I say: Forget that. You are lovable. You are lovable because of everything that adds up to make you who you are, not despite anything. And if someone is making you feel bad about who you are, like you’re “too much,” like you need to apologize for being ill, then they are the problem, not you. Date a good person. Don’t wreck yourself searching for the right guy or girl who will accept your grossness. Your grossness will matter so little, I promise.
Being in a relationship has a lot of layers- someone can find you attractive even if they know that you had surgery to remove a lump from inside your anus. Love is weird like that.
If you are sick, here are the things you do not need:
- A boyfriend or a girlfriend to come and save you
- A completely unflawed companion that thinks you only poop rose petals
- Someone to be the “Augustus” to your “Hazel Grace”
- A person that makes you feel guilty for taking care of you
- To hide your illness in order to feel more attractive
And here are the things that you do need:
- Friends and family to love you
- Someone who will stick a needle in your leg if you’re too scared to do it
- Someone to tell you on your bad days that it’s not too much
- Someone to help you get through the pain when it’s blinding
- The confidence to know that this someone doesn’t have to be a boyfriend or a girlfriend
- Probably a snowcone
I wrote a lot of nice things about my boyfriend on this post, because he is a good person who has walked with me through my struggles this past year and he does not get enough praise for that. Diseases are personal and people tend to keep them to themselves. This blog is personal, and while I want to keep it about me and not about him, I also think it was important for me to publicly acknowledge how much he does for me. I want to thank him for it because I know he would never ask me to.
But more than that I want to make it clear that having a significant other is not a necessity to get through an illness. Does Jon make my life easier? Yes, much. But all of that pales in comparison to the bigger things about our relationship- the way he makes me laugh, mannerisms of his that I smile to think of, the moments we spend sitting down to watch the rare TV show that is interesting enough to both of us. My Crohn’s is a reality of our relationship, but it has never really been a factor in us deciding whether or not we should be together.
Whatever happens in my life, I know I’ll be okay. Because boyfriend or not, I have people who will love me and take care of me. They are kind to me and it inspires me to be kind to myself. And every day for the rest of my life I will be the one to wake myself up and to feed myself and wash myself and put myself back in bed, battling this disease, always asking for help along the way.