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.”


via GIPHY

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.


via GIPHY

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.


About the author:
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.

9 Comments on Guest Post: How to date another human person when your immune system is trying to destroy you.

  1. Christie
    January 30, 2017 at 4:22 pm (10 months ago)

    Boy oh boy does this hit home. Was diagnosed with endometriosis right after my honeymoon, and it’s been a rollercoaster ever since. A crappy rollercoaster that I want to get off. I thankfully never had to go through the dating process, but I went through many periods of wondering if my husband would have married me if he had any idea that a chronic illness was part of the deal. He’s still here sixteen years later, so I’m guessing the answer is yes. Hang in there Kat, you’re an awesome and courageous human, and one day you will find the equally awesome partner you are looking for, who thinks cats and woodstoves and staying in sounds pretty good.

    Reply
    • Kat
      January 30, 2017 at 4:37 pm (10 months ago)

      Thanks, Christie. It’s relationships like yours, that have been through so much and survived, that help to keep the faith.

      Reply
  2. Hannah
    January 30, 2017 at 4:40 pm (10 months ago)

    I’m so glad that other people feel like this too. I mean I can’t leave the house at the moment, but at what point do you go – it’s been very nice tasking to you but I have to go lie down for several hours now.
    The struggle is real.

    Reply
    • Kat
      January 30, 2017 at 7:01 pm (10 months ago)

      We are in this together…alone…from our own houses that we rarely leave!

      Reply
  3. Genevieve Goetz
    January 30, 2017 at 9:12 pm (10 months ago)

    I’m a Spoonie blogger also… And I’ve written about dating and love while being sick a bit… Because Kat’s mom is RIGHT!!! This weeds out every single jerk and you will never have to go through the the up and down dramas of bad relationships! You will either find someone who won’t don’t you or who will. And someone WILL!! Every part of your journey could be embraced by a partner, and should be! I found my soulmate 6 months ago and have never been happier honestly I know it sounds crazy but it’s true! He’s moving in soon! Read my articles at The Mighty under my name… Or on my site

    We all deserve the Ben to our Leslie. Or Ann to our Leslie. Or waffles…

    Reply
  4. Rosalind
    January 31, 2017 at 9:47 pm (10 months ago)

    This is fab. Especially get the ‘how understanding can you expect someone to be right off the bat?’ I was on dating apps for a while and found it to be really hard work. I’d try and drop in my chronic illness early on to weed out some of the ‘dicks.’ I had to cancel a couple of dates because of flare-ups. It all just seemed like a minefield. Fortunately I met someone on Happn a couple of months ago who is amazingly understanding (and, coincidentally, also has chronic pain, although much less severe). I was really surprised by how fabulous he was about it all, as it wasn’t something I could tell about him from just chatting. So I guess that means it pays to give people who seem nice the benefit of the doubt! But it really does affect your psyche, and there are a lot of us feeling like it, so thank you for sharing! x

    Reply
  5. Suzanne
    February 2, 2017 at 1:15 pm (10 months ago)

    What a wonderful article, Kat. Thanks for writing it. I can relate so much, even though I am in a decent place health-wise currently. How soon do you reveal to a new date, “Hey I had a bone tumor and it could come back at any time! Where’s my ring???”? How romantic! Then I have friends (and family) tell me, why do you have to tell them anything like that? Wait until they are invested before you reveal your past. Well, this has been a major part of my life for, oh, almost 9 years now. It’s why I haven’t been able to get a career going, it’s why I have no savings, why I had to move home with my parents… etc. etc. It’s frustrating. And yet I’ve come so far. So I want to share that with people. Again, thanks for writing. Wishing you love and health.

    Reply
  6. Kelly
    February 5, 2017 at 3:49 pm (10 months ago)

    This was great all around! I’m in the same scenario. Dating again and trying to figure out how to seem sexy, cool & desirable… with an invisible illness. Your post made me laugh out loud! Maybe you should have a go at this blog stuff!

    Reply
  7. Kit
    February 8, 2017 at 6:13 pm (10 months ago)

    You have to choose your person very carefully, and I find this means putting it out there immediately. It’s part of me, and it’s going to be apparent very quickly; it’s not like hiding your habit of eating a block of cheese every night, which you can potentially keep under wraps for a long time. It’s one of the first things that I tell people about myself.

    I met my boyfriend online, and right in my profile it said “I have rheumatoid arthritis. I can’t go rock climbing, or skydiving, or run races with you, but I will happily cheer you on from the sidelines.” Then I moved on to the things I like to do. Now, like my boyfriend, a reader may not know exactly what rheumatoid arthritis is and they may choose not to research it (at least not right away), but you’ve told them, and if they’re good people then they work with you to figure it out. It’s been 6 and a half years now. It isn’t always easy, but you can make it work.

    Reply

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