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Living with Lupus

Relationship: When to Tell a New Date You Have Lupus

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Lupus is a personal battle. But, a relationship is an opportunity (and a challenge) to include other people in the battle.

Depending on how long you have been living with lupus, the current severity of your flares, your personal level of comfort inviting other people into the intimate parts of your life, and hundreds of other considerations, when to share with another person that you have lupus can be a difficult choice to make. In fact, it can be such a difficult decision that it may seem easier to give up on sharing the wonderful and nuanced parts of you with new people for fear of how the news of your lupus diagnosis may be received.

You know your body and you know your mind better than anyone else — even when it feels like lupus clouds your view. There are risks and rewards associated with all relationship choices. Listening inward, focusing on your own needs, may help elucidate the path forward that is right for you. Still, it may not make your choice easier.

As the late actress Vivien Leigh said:

Every single night I’m nervous. You never know how the audience is going to react.

Share Your Story (SYS)

Welcome the SYS – a new series where the lupus community can share their opinions on a range of questions about living with lupus. Be sure to join our email list so that you can Share Your Story with the community. Posts featured in articles are always anonymous. And, if you want to contribute after reading the article, add a comment below!

Share your experiences. Share your knowledge.

Share Your Story

 

Question: When starting a new relationship, when should you share with the other person that you have lupus?

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Marqus Z.

“I was diagnosed in 1975 while I was in the Air Force. I believe you should tell [a person so they can] see how far you have come. Why? [When you are] able to encourage someone else, there is hope and the ability to build faith.”

Helena F.

“You should tell the person once you realize this might be a long-term relationship; otherwise, it’s not any of his/her business. I’d wait because a lot of people don’t understand the condition, so I wouldn’t want to waste time explaining it to someone who isn’t going to be in the picture anyway.”

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Caroline

“I am 76 years old. It’s very important that whoever you go with or marry should know the truth and all the information about lupus. You need someone who will stand by you and understand what is happening to you, and will help you through it. My husband reads up on everything about lupus and has pulled me through a lot of bad times.”

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Anonymous

“As soon as possible. It’s a huge part of your life, unfortunately, and you need a loving, supporting person involved because it will become part of their lives as well if the relationship were to continue. I am lucky because I do have a wonderful supporting husband who has gone through many tough and good times with me and my unfortunate illness. I let him know about it right away.”

Comments (10)

10 thoughts on “Relationship: When to Tell a New Date You Have Lupus

  1. As you develop a relationship with someone you should be honest with that person. It is an awesome feeling to have the support of your partner. They can be a benefit in your recovery. My boyfriend helped by researching foods that caused me flares. He was beneficial in helping me recognize my triggers. And the compassion and understanding of my restorative rest was a great reduction of my stress level. It is hard to share the effects of lupus on your body when you quite don’t understand them yourself.

  2. I believe that it depends on the situation. If you feel as though this person will be in the picture long term the sooner the better so that they can decide if having a relationship with someone that is sick is something they are able to handle. I recently told a guy within the first two weeks, it felt right and it was what I wanted to do. We are no longer dating and me having lupus is a huge reason for this. I’m glad I chose to tell him when I did because the longer we would have dated the closer to him I would have gotten and I would have ended up hurt in the end.

  3. It entirely depends on the situation but I typically do not disclose until the relationship turns serious. Whatever that means.

  4. I have been in a relationship for 6 1/2 yrs.It is very hard to talk to them about it because they don’t care to hear it.I am just alone fighting this Lupus.

    1. Yep that is my situation also most people think anyone that talks about issues with health r hyper bout there illness they think we over think whats going on bout it so i learned to just shut up keep to my self its sad by doctors dont want to hear it either they just dont have time for us

  5. It depends. We’re you already friends with this person before starting to date. For me first dates were about seeing if you are compatible or a early attraction to each other. To me first dates are about seeing if there is even a connection or if you are compatible with each other. If not no need to go further. First dates are about fun and getting to know each other. For the first date, which rarely happens you find out you are crazy for each other than it’s a good idea to disclose. It depends on the individual if you feel a comfort level. I believe it maybe too heavy subject for first date but maybe for second date. It’s also important to know when you disclose you have to know how they may deal with it. If they don’t want to be a part of your life because of lupus than this person was never right for you anyways.

    1. The covid crisis has caused me to share more often because my husband and I have had to pull so far back from most activities. People really don’t understand lupus. So I usually don’t talk about it. I’m not a candidate for the vaccine because of previous vaccine issues. I have friends who also have lupus so we reach out to each other often. Those friends, my husband and my son and daughter-in-law are my support.

  6. I have been in a couple of relationships where I discussed my Lupus. One man was very understanding in the beginning, but after thinking it over; decided he wasn’t prepared for the always ‘unknown’ from day to day. He was a planner and lived on a very rigid schedule. The other man read everything he could on the subject, but couldn’t wrap his head around the fact that I wasn’t really 100% healthy because he said I didn’t look sick. So, when he wanted to plan an outing in the sun or at the beach, he decided I was just being hard to get along with because I told him I would be sick after being in the sun. Even though he read everything, he just couldn’t accept it. I live by the creed that I have a disability, the disability does NOT have me. I try to live as normal a life as possible, so many people don’t realize the extent of the major medical issues Lupus has caused me. I have had two open heart surgeries, multiple atypical pneumonia bouts, RA, Fibromyalgia and migraines since being diagnosed in 1987. It’s a struggle sometimes, but I plan to enjoy life as much as possible.

  7. I have been in a couple of relationships where I discussed my Lupus. One man was very understanding in the beginning, but after thinking it over; decided he wasn’t prepared for the always ‘unknown’ from day to day. He was a planner and lived on a very rigid schedule. The other man read everything he could on the subject, but couldn’t wrap his head around the fact that I wasn’t really 100% healthy because he said I didn’t look sick. So, when he wanted to plan an outing in the sun or at the beach, he decided I was just being hard to get along with because I told him I would be sick after being in the sun. Even though he read everything, he just couldn’t accept it. I live by the creed that I have a disability, the disability does NOT have me. I try to live as normal a life as possible, so many people don’t realize the extent of the major medical issues Lupus has caused me. I have had two open heart surgeries, multiple atypical pneumonia bouts, RA, Fibromyalgia and migraines since being diagnosed in 1987. It’s a struggle sometimes, but I plan to enjoy life as much as possible.

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