Relationships can be both difficult and beautiful, no matter who you’re with. When you’re able-bodied and neurotypical, it’s so easy to hold onto internalized ableism — even when you’re dating someone with a chronic illness. There can be many confusing dynamics, but it’s important to know what is, and isn’t, okay.
Always keep in mind that it’s not your partner’s job to educate you on ableism, and if they do, affirm them and their labor! Here are some other really great tips for being in a relationship with someone who’s chronically ill or disabled.
1. Be honest.
Loving someone who’s chronically ill can be challenging for everyone involved. For those of us with chronic illnesses and disabilities, it’s important that our lovers be honest with us and with themselves. Don’t get into a relationship with someone who’s chronically ill in an attempt to fix them. Doing so isn’t good for anyone and can turn into a toxic situation quite fast. If being with someone who has a chronic illness is something that you’re not okay with or feel that you’re not ready for, that’s fine. Your life is yours. (But know that more than likely, you’re feeling this way because of your internalized ableism.) Many of us experience feelings of isolation, but it would be so senseless to be in a relationship with someone who doesn’t want to be there.
Be in relationships with us because you want to be there, because you genuinely have feelings and love us. We’re not here to be fixed. We’re here to be loved and accepted as we are.
2. The Lover vs. The Caretaker.
I can’t even begin to express how important this topic is. It can be tricky as hell to balance your roles as lover and caretaker to someone who’s chronically ill or disabled. Communication is key. Setting boundaries, so you know how much help is too much help, is great. Often times folks can be overbearing and assume that we need help 24/7, which isn’t really true for all of us.
Often, folks can be overbearing and assume that we need help 24/7, which isn’t really true for all of us. Some of us might only need help with a few things, while others might need more. One of the biggest things to remember is that relationships are a team effort. A big thing that my partner and I do when cleaning, cooking, shopping, is team work. Because both of us are chronically ill, this has helped quite a lot. Our ability levels aren’t 1o0 percent when we’re alone, but when we’re working together, we are able to complement each other to complete tasks. We are able to feel validated on the things we are able to do and get things done.
At the end of the day, you’re our lovers, partners, boyfriends, girlfriends, etc. first! Having an open discussion what your partner does and doesn’t need help with, how much help is too much help, or not enough, is a great starting point. Checking in every so often to know if you’re both providing enough support for each other (both physically and emotionally) and if you need any additional, or less support, is really good as well. Respect boundaries and be sure not to switch into caretaker mode too often (unless that’s something your partner needs or is okay with).
Of course, trust is a huge part of any relationship, but it applies even more here. Trust us when we say we’re okay. Even when you think we’re sugar-coating our symptoms or hiding them because we feel like we’re a burden. Say something like “Okay, I trust you to know your body and your limitations,” or, “I totally understand that you feel like a burden, but I promise, you’re not. I’m here if you’d like to talk or need anything.”
Even though you love and care for us, understand that you aren’t in our bodies. Having folks not believe us, or assume that they know more about our bodies than we do, is violent and can be traumatizing as hell. We experience it from our friends, family and even doctors and clinicians. We deserve our autonomy over our bodies, just like you have over yours.
Being chronically ill or disabled all takes time, and that looks completely different for everyone. Sometimes we’ll be in bed for days, weeks, even months at a time. Some days we’ll be all up and able to do many things, others we’ll be all down and unable to do as much. It’s crucial to be patient and gentle with us. While our spirits may seem high, often we feel very drained and in pain, or depressed, out of control, etc. Rushing or trying to speed up our progress will typically overwhelm and stifle that progress and make us feel like we’re an even bigger burden.
At the end of the day, your feelings and your needs matter, just as much as ours do! Be sure to recognize when you need breaks. Be sure to love on yourself and practice self-care as much as you want or need to.
It’s vital to not be too overbearing, even when your intentions are good. Be patient with us, and yourself as well. Take breaks and take care of yourself. You’re our lovers and partners first. Don’t come into a relationship with the intention of fixing someone with a chronic illness or disability. We don’t need to be “fixed,” saved or patronized with gross, violently ableist tropes. Break the stigmas that tell the world that we’re unlovable, unattractive or too much to handle. Respect our boundaries and autonomy. Treat us like you would any other person. Love your partner the way they deserve to be loved. We’re not broken or defective. We can love and thrive. Love us and affirm us with our disabilities and chronic illnesses, not despite them.