Dating and relationships aren’t always easy, especially when you add lupus to the mix. If you’re just getting to know someone new, it can be tough to decide when or how to share your diagnosis with them. Lupus symptoms can also introduce unexpected ups and downs to well-established relationships, even those that have been going strong for decades.

Several members of MyLupusTeam have discussed how lupus affects their quality of life and romantic relationships, offering hope and an insider’s perspective to others. Here are some of their top tips, along with steps you can take to address common relationship barriers.

Early Dating and Lupus

Most people get nervous before a first date or feel a bit unsure in a new relationship. Sometimes, we assume that an issue like lupus is going to be a big deal, but it may not be. One member of MyLupusTeam said, “No one has been turned off from the fact that I have lupus. I try my hardest to keep pushing and not let it stop me from anything. So far, it’s been working.”

It’s important to remember that no one is perfect — chances are, your date has insecurities, too. Rather than count yourself out of the dating game, focus on finding the right partner who will see beyond lupus and appreciate you. One member shared, “To my single Lupies, emotionally, we struggle every day, but don’t lose yourself to lupus or anything else. Don’t forget to allow someone the opportunity to get to know you.”

Online dating is becoming the norm for single people of all ages to get to know each other, and it can be especially helpful for finding a partner when you have a chronic condition. As one member said, “I was encouraged to try online dating, mainly because I’m not as active and out in the public as I once was.”

And keep in mind, when you’re getting to know someone, lupus doesn’t need to enter the conversation right away. Share your lupus diagnosis when you feel like it’s the right time — maybe once you start to think that there’s a potential long-term future for the relationship.

Lupus and Long-Term Relationships

Stressors, including autoimmune diseases like lupus, often shed light on the existing strengths and weaknesses of a relationship. Although more than 50 million Americans have an autoimmune disease, many feel that they’re isolated, alone, or misunderstood. Support from your partner or spouse may run high during an initial lupus diagnosis and then wane over time. Unpredictable symptoms, flares, and the ups and downs of living with lupus can be scary for a partner who knows little about the disease.

Inviting your partner to ask questions, attend your doctor’s visits, and give you space when you need it can help you both cope and adjust to the changes that accompany your lupus diagnosis. While it’s fair to be patient with your partner, it’s not helpful if they stay stuck in denial or if they are continuously unsupportive. Encourage them to join you on your health journey, and remember you don’t have to suffer through anyone who invalidates your feelings.

Lupus, Intimacy, and Sex

Lupus and its treatments can have emotional and physical effects on your sex life. You may struggle with:

• Fatigue
• Weight gain
• Self-esteem
• Body image
• Vaginal dryness
• Mouth sores
• Chronic pain

Any of these can affect your sex drive or ability to engage sexually. Proactive and compassionate communication is crucial when it comes to intimacy. One tactic for a productive conversation about your sexual preferences or needs centers on “I statements.” This means when you speak, you stick to your likes and feelings, and you start sentences with “I …”

If you’re concerned about lupus affecting intimacy in your relationship, remember, sex isn’t the only way to connect with your partner. Cuddling, massages, foreplay, or simply spending more quality time together can make your relationship stronger during times when sex isn’t as frequent.

As one member said, “My husband and I have been married for 36 years. We both have had illnesses along the way that have made sex impossible for a few months at a time. If someone really loves you, they will love you in sickness and in health.”

If sex becomes a common cause of arguments or seems to be putting distance between you and your partner, consider involving the help of a qualified health care provider. Depending on your needs, a couples counselor or a sex therapist can provide objective and professional guidance to help get your relationship back on track. It’s possible that addressing issues with your emotional, mental, and/or physical health (such as trying different positions) will solve the factors holding you back.

Finding the Support You Deserve in a Relationship

Just because you have lupus doesn’t mean you should tolerate an unhealthy relationship. Relationships must be based on a foundation of mutual respect and support, regardless of uncontrollable circumstances that may arise.

A member of MyLupusTeam said, “Support is one of the top ingredients needed to survive, maintain, and LIVE with this disease … Clear and honest communication is required so you both know how and where you stand. With good communication, you can build a plan for your successful transition, whether that includes building with a willing partner or building without an unwilling one.”

Although it’s normal for your partner to worry at times (and to have difficulty understanding what you’re going through), a true partner makes an effort to support you and learn about your needs.

Some members of MyLupusTeam have found lupus to be the breaking point in an already weak relationship. Some talk about how their diagnosis prompted them to move on and find someone else.

“My ex-husband told me he didn’t want to be with a sick person,” one member wrote. “After he was gone, I wasn’t sure I could take that kind of rejection again. I was just giving up when I met my husband.” The member went on to say they faced difficult lupus flares throughout their current marriage. “But 12 years later,” they reported, “he’s still walking up to the bathroom door and asking, ‘Are you OK in there, Chickie?’ ”

Another member — a veteran of a 45-year-long marriage, offered this advice to those looking for love: “You will know who is right for you,” they wrote, “if you tell him that you can be in bed for days at home or in the hospital, and he doesn’t run the other way.”

If you’ve given your current relationship a fair chance and you’ve exhausted your outside resources (like therapy), it might be time to see what life has in store for you … as a single person. Support from friends, your health care team, family, and online or in-person support groups can be of great assistance when you feel alone in your relationship’s ups and downs.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 207,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you single and dating with lupus? If you’re partnered, how does lupus affect your relationship? Share your experience in the comments below, or start a conversation by posting on MyLupusTeam.