I've been with my husband for almost five years. We were friends for a few years before we became a couple. During that friendship, I got sick and began having a lot of muscle problems. I was handed several misdiagnoses before my doctors decided that I have an autoimmune disease. I have since been diagnosed with a few other diseases on top of that.
Because he was my friend at the time, my husband knew about my health problems before we started dating. He knew I was sick and we had a very long, hard, frank discussion about it one night when we decided we wanted to be more than friends. I laid it all out there for him. I told him that there would be countless doctors appointments, lots of tests, tons of pain, plenty of obstacles, and a boat load of uncertainty about how my body will function for me in the years to come. He took it all in and then he told me he understood.
He said that he knew it would be hard sometimes but he wanted to be with me… and those things were part of me. He said we would take it one day at a time. He said we all have something that's going on with us, this was just my something (but he didn't say it in a way that reduced what I'm going through… he's cool like that).
TV shows and movies that led me to believe that a guy wouldn't want to get involved with a sick girl.
I was relieved because, admittedly, I was raised on TV shows and movies that led me to believe that a guy wouldn't want to get involved with a sick girl (unless maybe she was Mandy Moore in A Walk to Remember). Thanks to all of the media I was shoving into my face growing up, I was made to believe that because I was sick I probably wasn't worth the “hassle.” I probably wasn't good enough for love. Or if I found love, the person loving me would have to be some sort of saint. Oh, how quickly I learned just how misleading and damaging those beliefs actually were.
I remember when we first started telling people that we were officially a couple. A lot of the responses were things like: “And he knows you're sick?!” “He doesn't CARE that you're sick?” “WOW that's so good of him.” “Omg what a great guy.”
Those responses made me feel weird. Yeah, he's a great man. But they thought he was great just because he was willing to “put up with” my malfunctioning immune system? He's great because I might need to use a wheelchair someday and he would still CHOOSE to be with me? Why does that automatically make someone great? Okay, he's a great man. But I'm also a great woman (tooting my own horn here) and we are a great couple. Illness and disability certainly play no part in that.
When he proposed to me last year I was ecstatic. I love this man with all of my heart and I couldn't be happier. I'm so glad he's there with me through thick and thin, and I love being a support system for him, too. But when we started announcing our engagement, I began to hear it all over again. “You're SO lucky he wants to marry you.” “He's such an amazing guy to take care of you.”
My husband was being placed on a pedestal. I was seen as a damsel in distress.
I finally realized what was happening. My husband was being placed on a pedestal. He was seen as a hero in our love story. And I was seen as a damsel in distress, which is interesting because when I received my first diagnosis, I actually started a blog called Damsel in a Dress. But I picked the name out of humour. I was just trying to be clever. I'm far from a damsel. And although my health may be distressing at times, I'm certainly not helpless. (But I do love a good dress!) I made it clear on my blog that I didn't actually need saving. I didn't need a prince to come along and rescue me. I could always rescue myself just fine.
But other people obviously didn't think that. They thought my love story was straight out of a heteronormative Nicholas Sparks novel. The knight in shining armour rode in on a white stallion when the damsel needed him the most, picked her up and galloped off into the sunset with her slung over his back so they could return to his castle and he could spoon-feed her soup when she's sick. Okay, that sounds more like a fairy tale than a Nicholas Sparks novel. So let's just change the knight to a brooding, chiseled mechanic who wears lots of denim shirts.
To hell with alllll of that.
People may think my husband is a hero, but he's just a regular guy. Don't get me wrong, I think he's a loving, funny, fiercely intelligent, caring, and handsome regular guy. He's everything I want in a partner. But he's not a hero and I'm not a charity case he has devoted his life to. Our relationship is not a sad yet uplifting Hollywood movie. Our relationship is hard work. My illness is hard work. Being sick is not romantic, but we find the romance where we can and we have a wonderful life together. There is more laughter than there is sadness or worry. But that's because we both put 100% into this.
He may pick me up when I fall sometimes but if we're calling anyone my hero, it's me.
He may pick me up when I fall sometimes but if we're calling anyone my hero, it's me. I will myself out of bed everyday even though I'm in pain. And on the days that I can't manage to get up I work on reminding myself that it's okay. I work hard on acceptance and rehabilitating myself after each setback. I go to appointment after appointment and get myself through all the terrifying news that gets thrown at me from doctors. I can dry my own tears and I pick myself up off bathroom floors. I advocate for myself every single day so that I don't become a number lost in a broken system. I don't need a hero to save me. And just because he loves a sick woman, my husband doesn't automatically get knighted. He gets just as much love and support out of our relationship as I do — I make sure of that.
Because of these well-intentioned but hurtful comments I'm so used to hearing about our relationship, I thought long and hard about what I wanted our wedding to be. I knew a bunch of guests at our wedding would have my illness in the forefront of their thoughts as they watched me marry my husband, especially because my health has gone fairly downhill lately and I've had to leave my career because of it. I knew they would be thinking how truly amazing my husband is for providing me protection for my entire life. I knew they would be thinking how lucky I am that I, a sick person, could find someone healthy to vow to be there for me. I knew this because they were raised on the same misconceptions about illness and disability from the media that I was raised on. I knew that if I let it, our wedding could be the Lifetime movie event of the season.
So I decided not to play into that during our ceremony. I didn't want there to be some dramatic reading about being there in sickness and in health, emphasis on the sickness. I didn't want to add to the narrative that he's a hero for loving me, that any person who chooses to be with a sick person is a hero for making that choice.
I didn't want him to be put up on that pedestal in front of all our family and friends unless I was climbing up there with him.
So we wrote our own ceremony, with help from the scripts on Offbeat Bride. We chose a reading about friendship (“Love” by Roy Croft), because at the root of our love story is a beautiful friendship. We opted not to include the words “in sickness and in health” in our vows. Instead, we talked about simply being there for each other (and bingeing Netflix shows together). We had a friend sing a happy love song (“Flowers in the Window” by Travis). We made sure the ceremony was feminist and that there was no wording that would make our relationship seem anything but equal and balanced. I didn't want to be seen as lesser than my husband on our wedding day, because I'm not. I didn't want him to be put up on that pedestal in front of all our family and friends unless I was climbing up there with him. I mean, I love when people shower my husband with praise and affection, just not for that reason.
With that being said, we still wanted to say vows to each other that reflected just how far we are willing to go to help each other out. I didn't want to completely erase my illness from this day, and neither did he. My illness is part of us and part of our story, we just didn't want it to be a spectacle. So we decided to share private vows with each other before our wedding ceremony. As the sun was setting we climbed a hill overlooking our city and we read to each other the vows we had prepared. I thanked him for always being there with me, through everything.
I promised to do the same for him. He vowed that he would be there for me no matter what. It was a beautiful moment between the two of us where we felt comfortable discussing my health and all of the other important, private things that make us who we are as a couple. It was perfect. We got to say what was in our hearts and I didn't have to stand in a room full of people who would then gush over my husband because he promised to be by my side, whether that's standing up or sitting down.
Our ceremony was celebratory. It wasn't sad. Our wedding didn't become that Lifetime made-for-TV movie. We all know that I'm sick, but that's not what makes our love special, so I didn't think it really deserved the spotlight on our wedding day. We focused on all the amazing things we have instead of focusing on the few things we could use a little more of (like muscle function).
I still heard one or two “you're so lucky” comments thrown my way during our receiving line after the ceremony. But I also overheard some guests telling my husband how lucky he is that he got to marry me. And that made me feel like finally, after all this time, after all of these essays and conversations about illness and disability, the people around us were starting to listen. I'm lucky, yes. But he's lucky, too. We are both equally lucky that we found each other. No one is a hero in our story. We are just a couple of humans who are madly in love, malfunctioning immune system or not.