Living and Loving With Chronic Illness
By Eliot | @ChronicallyGrumpy | February 9, 2018
Life with a chronic illness always comes with a unique set of challenges. It influences the way we exist in the world in a number of ways; how we get ready in the morning, work schedules, family dynamics, and friendships. There’s a lot of information circulating within our community about dealing with friends who don’t understand, or handling unsupportive family members. Unfortunately, there’s not nearly as much circulating about romantic relationships.
For those of you who are single or dating around, there’s a whole other level of first date jitters. We all get nervous about what to wear and what to say, if they’re as nice as your friend says they are, who’ paying for dinner, etc. When you’re living with chronic illness you might worry about food allergies at the restaurant they picked, what they’ll think when they see your central line, or the questions they might ask about your cane. It bears the question of when and how do you disclose your illness to someone you’re just getting to know? How will this influence our potential relationship? The answers will vary from person to person, because it’s a very personal experience. You alone get to decide when and how you tell someone about your illness, or if you tell them at all.
Telling them beforehand can help avoid any stares or confusion by letting them ask questions beforehand. Maybe you want to let them know about your plethora of allergies beforehand so that you can avoid places and restaurants that can lead to disaster. On the other hand, not disclosing beforehand can weed out who is and isn’t worth your time. If they keep asking you invasive questions and staring at your cane, maybe they’re not the one. Some people with invisible illnesses who don’t use any mobility aids (or don’t need them on these dates) or don’t have any visible medical devices might wait a while to disclose. Taking time to get to know someone and to get more comfortable with them can make the conversation less stressful. In the end, it’s up to you and what you feel is best and is most important.
Then there’s the other side of things; long term relationships. My boyfriend and I had been dating for over a year when my symptoms became very real and we learned that I was sick. Other people may have been living with their illnesses long before they entered a long term relationship. If you were already in a relationship when you learned you were sick, it can be a shocking adjustment at first. If you were sick prior to it, the adjustment might be a bit more mellow. Either way, it’s going to function differently than a relationship between two healthy people might.
The most important aspect of a relationship like this is boundaries. Boundaries are important in any relationship, but it’s beneficial to sit down with your partner and have a real discussion about it. What are they comfortable helping you with when it comes to your health? What are you comfortable having them help with? Are they willing to carry you up the steps if you’re struggling with mobility? Are you uncomfortable with the idea of them helping you shower if you need assistance? You need a clear set of rules in order for things to work. Some partners will also take on the roll of caregivers, while some couples aren’t comfortable with that idea. There is no shame in having your partner assist you when you need it, and there is no shame in not wanting them involved like that. Just like I mentioned before when talking about when and how to disclose an illness, how much or how little assistance your partner will provide is very personal.
Even for those of you who choose not to have your romantic partner also assist in your care, there are still adjustments that need to be made. You might not be able to go to that late night movie together, or go to the club every Saturday with your friends. They might not get to share a favorite food with you due to an allergy, or show you their favorite movie because it has an epilepsy trigger. These are all adjustments that seem small when you read them, but are far from it when they actually happen. It can cause friction, it can be disappointing, but you learn to adjust and find new things to enjoy together.
Personally, my chronic illness is part of the reason I have such a close and meaningful relationship with my partner. We dealt with a lot of disappointments together; from him not being able to share a favorite, to all the times we’ve had to go see a movie twice because I had to leave halfway through, to all the frustrating ER trips and scary falls. We made adjustments ad discovered new things together, which is an incredible bonding experience. We know to bring a laptop to the hospital so we can watch movies in the waiting room. Having to have help showering used to feel so embarrassing, but now we just put on music and splash at each other.
It can seem daunting at first, the idea of disclosing an illness to someone you’re dating or juggling a dedicated relationship along with ten different doctors. I can say that it’s always worthwhile. Some people will leave, just like the fading of friends and family that we are all too familiar with; but new relationships will form in their place. While it’s a lot of hard work to build up a relationship like this, the kind of bond you form with the people who stick around can make the stressful mess of living with a chronic illness easier in the long run.
Eliot Michaels is an artist, a blogger, and sometimes-musician living with multiple chronic illnesses both diagnosed and undiagnosed. They strive to raise awareness (with a dash of humor) through their blog, Chronically Grumpy.