Patient Blogs | Lupus
How I Navigate My Relationship With a Chronic Illness
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It can feel daunting to date and navigate being in a relationship when living with a chronic illness. We all know it’s hard to date in general! Before I met my girlfriend, I worried that I would never find someone who would understand what I was going through, but I did, and I couldn’t be more proud of our relationship. 

Because I was publicly involved in advocacy when I met my girlfriend, I didn’t have to navigate telling her that I had lupus. I was actually speaking at a conference when we went on our first date, so it came up naturally, and she asked me more about what lupus was. 

I’m someone that really likes when people ask questions, it makes me feel like they genuinely care and want to understand the condition. I can tell them how it specifically affects me and my life on a day-to-day basis. This began the many, many conversations we would have throughout our relationship about lupus. Communication has been our biggest help in navigating this together.

We all know that how you feel at any given moment can change at the drop of a hat. It can be very confusing and jarring for a partner who’s never experienced that before. It can also be frustrating when you have to cancel an exciting date or need to leave a fun event early. 

There’s definitely an adjustment period for your partner, and that’s OK, they are human! But never let anyone punish you for canceling plans and having to take care of your body. When this comes up, me and my girlfriend always discuss what would be best for both of us and not cause resentment. Does she go to an event without me? Is it a situation where I could really use her help at home? Can we reschedule? Decisions are made on a case-by-case basis, but we try to be as honest as possible about what we need so that everyone is as happy as possible and that I’m never jeopardizing my health. 

Something that has really helped our relationship, not just with my lupus, is telling the other person what kind of support we need when we’re upset. When I’m not feeling well, a lot of times there’s nothing I can do about it. My girlfriend naturally wants to come up with solutions to help me, but sometimes I just need to vent. In those situations, I’ll say: “I just need you to listen right now,” or “I just need to vent.” 

It’s also helpful to figure out what makes you feel loved and supported in those moments when you’re struggling. When I’m having a day where I’m not feeling well, I often say, “I don’t feel well,” over and over again. After a while, there’s only so much my girlfriend can say or do! I’ve learned that it makes me feel better when she simply says, “I know, I’m sorry,” or “I hear you,” or gives me a big hug. Being explicit about what I need in those situations has helped us avoid miscommunication and hurt feelings.

Living with a chronic illness is difficult in itself, and it can feel so overwhelming to bring another person into that world so intimately. It absolutely takes time and work to help a partner understand and support you in the best way possible, and to figure out how you can support them in it as well! Just remember you are not and will never be a burden to your romantic partner, or anyone else in your life, for that matter. If someone makes you feel that way, they don’t deserve to be with you. Be honest about what you need and what you want because you deserve to get it, and you deserve to be loved.

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Photo Credit: Ruben Earth / Moment via Getty Images

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Erica Lupinacci

Erica Lupinacci

Diagnosed since 2009

Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

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