My Boyfriend Is Not a Saint for Putting Up With My RA
An RA diagnosis doesn’t place us in the role of the ‘patient’ in our romantic relationships. It’s time for us—and the rest of the world—to start believing that.by Lene Andersen, MSW Patient Advocate
I have severe and obvious rheumatoid arthritis (RA) and use a wheelchair because of it. My partner does not. People stare at us when we hold hands in public. You can see the surprise (even shock) in their eyes, quickly followed by the reflection of a dozen questions tumbling over each other in their minds. And then, for the grand finale, the Aww... isn't he a darling for being with the sick woman?
I'm often viewed by the world as someone with only one dimension—sick—not as a person with many facets. Illness and disability are scary. They remind us that we aren't guaranteed a body that'll always obey our every whim and desire. They show how fragile health can be. And because we live in a culture that assigns worth according to productivity, you have worth if you can contribute to society (usually by working). If you can't, you don't.
And that, right there, is at the heart of the matter, isn't it? That when you are sick or have a disability, it seems as if you somehow lose whatever worth or appeal you may have had when you were healthy and able-bodied. It's as if you're somehow damaged goods now, that you can't... what? Hold your own? This is nonsense. My partner and I have been together for 10 years and we have a relationship of equals, supporting each other.
You Can Need Help and Be a Lover, too
Once, back in the dark ages before the internet, I placed a personal ad in a newspaper, which led to a conversation with someone who'd responded. When he heard I had used a wheelchair, he ran screaming for the hills, but not before sputtering something about wanting an "equal partner." I was curious enough to ask why I couldn't be. It'd be someone who could help paint the house, was his answer.
Usually these kinds of statements are not about the painting, but the help. Both the giving and receiving. Somehow, we have arrived at a point where the act of caregiving for another adult excludes all other roles. One person is the caregiver, selflessly enduring the "psychological strain" of helping with personal care and the way it changes the dynamics in the relationship, making it completely impossible that they could be both a lover and a caregiver. Simultaneously, you're seen as transitioning to a patient role. And as anyone who's waited for a doctor while wearing a skimpy paper gown can attest, there is nothing less empowered, asexual, and pitiful than a patient. Therefore, you have nothing to offer in the relationship except the conferring of sainthood upon the person helping you out.
Love Is Love
That's not what happened to David and me. We met on a dating site and became friends. Then we started talking on the phone and eventually clued in to what had been obvious to others for months: We were in love. He's helped me since the beginning, and it's never been an issue. It's simply part of what happens in a day and our talking and laughing continue throughout.
On the Squirmy and Grubs YouTube channel, Shane Burcaw and Hannah Aylward post videos about their lives, and what it's like to be an inter-abled couple. One of the recurring themes is a discussion about comments from viewers who are absolutely sure that a healthy and beautiful woman could never actually be in love with a man who has a severe disability and relies upon her for, as Shane says, keeping him alive.
And it resonates. Deeply. Because my partner David and I have had multiple encounters with people who are shocked that we are in a relationship (if only I had a penny for every time someone has asked if he's my brother). Moreover, they think that I'm equivalent of a potted plant, down to, for example, a store clerk asking him what size top I needed.
David has no idea what size my tops are. He just takes them off. Sometimes as a caregiver, other times for entirely different purposes.
It Doesn't Take a 'Special Type of Person' to Be With You
The worst part is how these messages become internalized. We are a product of our culture and so, on some level we may believe it, too. Many I've spoken to feel their diagnosis means they have less to offer their spouse or, if single, believe they will never find love because of it.
I have been there myself. From when I was very young, I was aware that it would take someone pretty special to be able to see me first, and my illness and wheelchair much, much later. I knew this because every day, I had to fight to be seen as a person. But the trouble with perception is that it becomes reality. I expected that I'd have to wait for the one in a million, and therefore didn’t see those who stood in front of me, truly seeing me. I expected special, so I never saw normal.
It was only much later that I realized that this blindness to potential was just as much within me as it was in others. That's when I began to tear down my own stereotypes and discovered that it's actually not unusual for someone in a dating situation to be able to see me first.
You Have to Love Yourself
Here's the tricky part: In order to reclaim your value—as a person, a hot babe, a partner—you have to begin by rejecting a cultural true-ism that illness and disability are single-faceted, excluding anything else.
It's hard. You'll get a lot of messages that will erode your confidence, self-esteem, and body image, but the first step is to notice them. Be on the lookout for toxic stereotypes, talk of someone with chronic illness living their life/working/having a family "despite" the condition, and suggestions of surprise in connection to achievement or beauty. It can be pretty subtle sometimes, but once your radar is on, you will see these messages everywhere. It implies an expectation that people normally can't do these things simply because they have an illness or disability, which simply isn't always true and it shouldn't be the default expectation.
You have probably heard the old adage that to love someone, you have to love yourself first. Chronic illness makes it hard to fully embrace yourself and your body as beautiful and worthy. Follow chronic illness warriors with a positive body message and start talking with your peeps about this (hint: almost everyone, healthy or not, struggles with accepting and loving themselves). As you gradually let go of the fairytale and become friends with your body, united in the struggle against the illness, you can open up to real love. The kind that accepts you just the way you are.
Please be patient with yourself on the journey. There are many factors in coming to accept yourself, even love yourself, and it will take time. Therapy can help, both in terms of accepting where you're at, healing, and creating your own definition of a loving and healthy relationship—the kind in which both of you take care of each other, in whatever way that looks like.
You've probably guessed my position on whether my partner is a saint for being with me despite (<- see that gross word?) my RA. Let me put it this way. He is occasionally a total sweetheart for putting up with my more extreme character traits, just as I am when I put up with his. But a saint because he sticks with the sick woman? Hell, no!
- Karraker, Amelia and Latham, Kenzie (2015 Sept). In Sickness and in Health? Physical Illness as a Risk Factor for Marital Dissolution in Later Life. J Health Soc Behav.; 56(3): 420–435.