I have a friend named Kat. Kat is cool and funny and she has rheumatoid arthritis. I love when my cool and funny friends want to share a story on my blog, so Kat has decided to do just that. Here is Kat’s story about trying to date when you have an unpredictable autoimmune disease. Thanks Kat! *high-fiving a million angels*
I am Kat and my body is broken. It may look like a regular body on the outside, but inside, it’s kind of a mess. This may be a familiar situation to people who read this blog, but I guess I am new (to you, and to blogging. So please be kind). I have rheumatoid arthritis, which basically makes my immune system think that it’s bad and attack itself. Then I have to go on medication that shuts down my immune system to trick it into thinking it’s not there anymore. For real. I get lots of colds. I’ve had it for about seven years off and on. (Sidenote: seven years, holy crap. That seems like a long time). Sometimes it’s managed by medication, but sometimes that medication stops working, or it works and then I’m ok and it’s cool to go off it and I do and am fine for like two whole years and then it comes back again and that medication that I was on before was actually terrible for me and so I don’t want to go back on it again so I get kinda depressed and try different drugs for two years that kind of don’t really work, just to avoid going back on terrible medication and finally get to something that actually sort of maybe works. (True story). Sometimes it’s manageable, but not in a long-term kind of way. There are many different scenarios that I could tell you about, but that’s the basic deal with my body. But I’m not here to talk about that. I’m here to talk about dating. Dating with a chronic illness.
I don’t do it. To be fair, I wasn’t a super active dater (is that a word? Dater? Person who dates) before I got sick, so it’s not like I’m missing it, but it’s something that as a single woman, I do, from time to time. And it gets complicated. Dating in general is complicated. Dating with a chronic invisible illness is a bit more complicated. How soon do I disclose this information to a potential partner? How do I do it and make it seem real, but like, totally not a big deal? At what point in the relationship do I reveal that there are going to be days, weeks, months where they are basically going to have to take care of me. Not like, take me to the bathroom or help me shower, but there’s going to be a lot of cleaning up after me, and making me food, and sometimes serving it to me in bed. And maybe even more emotional caring for me – telling me I’m still beautiful even though the Prednisone has made me put on weight that I see in my face every time I look in a mirror. The fact that I won’t want to pose for pictures or look at myself in said mirror because of that. The fact that all this makes me feel terribly shallow and how could they love a person who is so narcissistic. Wow. That got deep fast. See my point? This all crosses my mind every first date I have. Getting to know someone new is exciting. Feeling like you’re trapping them into a life of servitude is not. They should know all this beforehand, but how do you tell them without completely scaring them off?
Add on to this that I am a fiercely independent woman. Independence is my badge of honor that I’ve worn for many a year. It’s a bit tarnished these days, but I still pull it out every now and then and exercise it in ways that I still can. For instance, it is easier for me to ask a stranger to help me with something than a friend. This way they’re just doing something nice for someone they don’t know and can go along with their day afterward and feel great about themselves. A friend I’d feel like I have to repay. And I can’t repay what they’ve done for me, because I can’t do it for myself. I’m getting better at accepting help from friends who clearly want to give it, but it’s still a big deal to me. At what point in the relationship would I feel comfortable asking them to do all the things I actually need them to do for me without feeling helpless and useless.
NOW I WILL SHARE SOME ADVICE WITH YOU, THE HUMAN PERSON I AM TRYING TO DATE.
I guess if you’re going to be dating me (specifically) or the chronically ill (generally), here are some me-specific things you need to know that may also apply to others:
My body is going to be a dick. It will not allow us to plan things in advance. I mean, we can try, but it’s like a 60/40 chance it won’t work out in my current state. How early on in a relationship is “I’m having a really off day, body wise, can we reschedule” going to be an ok thing to say? If I need to have some downtime to myself (exhaustion is a really big problem), how understanding is this person going to be? My mother says that this will help weed out the assholes, but like, how understanding can you expect one person to be right off the bat? To me, it just sounds a lot like “I’m sorry, I can’t, I’m washing my hair.”
I’m going to have weird freak-outs over normal things, good and bad. I will notice weird symptoms and things that happen to my body that normal people would ignore. I will want to ignore it, but it is probably better if it is addressed. There’s a lot of weird body chemistry going on in mine, so pretty much every weird thing needs to get looked at. Get used to dropping me off and picking me up at doctor’s offices and waiting rooms. Also get used to me telling you hilarious stories of what happened in said waiting rooms and doctor’s offices. I will have many stories about whether or not the person taking my blood (who, by the way, is called a “phlebotomist” which sounds like they should deal in plants, but they don’t, that’s a “botanist”) was any good at needles, and will have the fun bruises to show you when they’re not. However, also get ready to celebrate really mundane everyday things. The day when a flare-up starts to reside and it doesn’t hurt to get out of bed. The day when I discover I can make a fist with my left hand again (FYI I cried a lot this day). The day when I can sit cross-legged on the floor again (still waiting on this one). These days will be the biggest tiny victories for me in which you will get to share.
I will get very angry and very sad about things and it will have nothing to do with you. You will have to let me feel these feelings, and I don’t imagine that will be really fun for you, but it’s best for me to just deal with it. I will be sad that I can’t do things that I used to do before. I will be very angry that my body isn’t allowing me to go out with my friends on a simple hike, or go to a show that I really want to see because it’s at a bar and I know there is no sitting area. I will cry on the kitchen floor because it’s stupid Orangeman’s Day, so all stupid government offices are closed (thanks, Newfoundland) and the stupid insurance on my stupid expensive medication has lapsed and I don’t have a spare couple thousand dollars to cover what is normally covered by my provincial insurance (thanks for real, Newfoundland. I’m being sincere this time) until my superhero angel fairy godfather pharmacist sorts it out for me, and then I will be ugly crying with joy. It’s going to be weird and confusing, and I just don’t know how to bring someone into this life.
I’ve become a lot more open and vocal about my RA, and that’s actually been helpful in dealing with it myself. I’ve had to quit certain jobs I loved because I physically can’t do them anymore. I’m still trying to get the life/job ratio sorted out in a way that is less physically taxing on my body, but I am also able to support myself. My life is weird and complicated and messy, but it’s my life and I made it and I don’t think I’d really have it any other way. Sure, I’d love to be married to some rich Hollywood actor or some famous musician, be totally supported financially, have smoothies brought to me every morning and have access to all the best doctors and drugs that money can buy. But then I’d be “so-and-so’s wife with that weird disease” and like, everybody would expect me to be inspiring and shit, and I’d have to be some high profile spokesperson, and I just really don’t like having to put on makeup every day. I realize that as the wife of a famous person, I could have someone do it for me, but that seems like a lot of effort. I just don’t want to have to have a billion fittings for that Vera Wang dress that I’m supposed to wear at that benefit/red carpet event/record signing. I’ve got better things to do. Like watch a lot of Netflix, hang out with my cat and eat nachos while making my friends always come over to my house, because leaving my own house isn’t always that easy. That part I can get behind. Also, it’s winter and I have a wood stove and a really cute cat.
Kat Burke is an actor/musician/producer living and working in the arts in downtown St. John’s. She likes music, nachos, tacos and pizza (in that order) and loves her fluffy ginger cat, Bakeapple. When she’s not on her couch watching the West Wing or Gilmore Girls (for the 20th time) she can be found at the LSPU Hall or downtown catching some live music…awkwardly from the back…feel free to offer her your chair, her knees aren’t what they used to be.