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)
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Share Your Story
Question: When starting a new relationship, when should you share with the other person that you have lupus?
“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.”
“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.”
“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.”
“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.”