The Dating (with lupus) Game


Blind Date Scenario

The Right Time

The Right Words

The Right Person



Blind Date Scenario

Nick: Hi I’m Nick, nice to meet you.

Kelli: Hi, I’m Kelli.

Nick: So Kelli, tell me a little about yourself.

Kelli: Well, I have an incurable autoimmune illness that attacks most of my connective tissue, including my internal organs.  I have been hospitalized dozens of times, and have had multiple surgeries. I never know when I am going to be sick, and any little cold can send me into the hospital.  Oh, and I am highly medicated at all times.   

Nick: (to waiter) Check please…

Sound familiar?  

Thankfully, my now husband did NOT ask for the check after I told him on our first date that I have lupus.   But, to be fair, he didn’t really know what lupus was.  I like to think he was so charmed by my clever wit and dazzling personality (insert husband eye roll here) that I probably could have told him that I had the zika virus and he would have nodded his head and smiled.  

Sadly, many people DO experience the cold shoulder after disclosing they have lupus.  This is primarily due to two things.  One: either he/she knows what lupus is and is immediately struck by a lightening bolt of fear and uncertainty.  Or two: he/she has no idea what lupus really is and brushes it off like it’s a stubbed toe.  

So how much do you tell someone that you just met, or are trying to get to know about your lupus journey?  When is the best time?  How do you best explain it so they will understand?  When do you know if this person is someone who will be a supportive partner? And when do you decide to move on?

Before we begin, full disclosure time.  We, at Kaleidoscope Fighting Lupus, are not therapists.  We don’t claim to be “Dear Abby” or Dr. Phil.  We cannot give you a magic equation to finding Mr. or Mrs. Right.  However, what we CAN do is offer tips on setting yourself up for success in the dating/relationship/companion challenge within the confines of dealing with a chronic illness like lupus.

So ready to play the Dating (with lupus) Game?

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The Right Time

To be honest, or not to be honest…that is the question.  For those who suffer with a chronic illness like lupus or a lupus overlap disease, deciding to tell (or not tell) a person you are pursuing can be quite an agonizing decision.  Some people decide to wait until they get to know the person and feel more comfortable sharing that part of their life.  Some people, like me, tell the person on the first date.  So which is the most beneficial option?  Which will set you up for success in the weeks, months or possibly years to come?  J.H. Johnson, author of Diary of a Mad Lupus Patient writes, “I would definitely recommend being honest up front.  Have the discussion on the first date.  If the person is not willing to learn or be enduring with you, they aren’t for you.”   

Lupus is a part of your life, but it isn’t who you are.  It is a part of your history but it is not your ENTIRE story.  Anna, in her blog from NewLifeOutlook writes, “One of the big issues with dating with lupus is that we often erroneously think lupus defines who we are as people. We may have had a bad experience here and there with a date or relationship in regards to lupus, and then expect the worst from people from there on out.”

I like to believe that honesty and authenticity are attractive traits. I mean, who has time for smoke screens and facades?   Anyone worth your time will respect your journey if you respect theirs.  If you truly want to get to know the other person, then let them get to know you.  Don’t get me wrong, there is no need to let your lupus dominate your conversation, but it is wise to mention it.  Seeing how someone responds to such news is a good way to see where they rank on the listening/empathy/caring meter.   You might be surprised to learn that they are more taken back by the fact that you have seen the movie Star Wars two hundred times than the fact that you have lupus.  

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The Right Words

How do you even begin to describe lupus to a person that has no idea what it is?  How do you break it down in a way that is coherent, understandable and not going to cause them to slowly scoot his/her chair away from you like you have the walking plague?

In our blog, Top 5 Things Most People Don’t Know About Lupus, we mention some common misconceptions about the disease.   Here are some talking points that will help you get the conversation going:

  • It is not contagious
  • It affects everyone differently
  • There is no cure, but it can go into remission
  • It can be controlled with medication
  • It’s an autoimmune disease
  • It can affect many different part of the body
  • It can cause fatigue and pain

You can find a more detailed breakdown on what lupus is and its symptoms here.

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The Right Person

Finding the right person to compliment your life is no easy task. But, take heart, because this is a challenge for everyone.  Everyone comes with his or her unique history, biology and experiences.  Sharing in each other’s hurts and trials should bring us closer together.  If you find the person you are dating is hurtful, invalidating or completely narcissistic and non-empathetic, it’s time to move on.  

This brings me to my next point.  Worthiness.   Most newly diagnosed lupus individuals may feel unworthy of love because of the so-called “lupus baggage.”   This can lead to having a big chunk taken out of one’s self-esteem.   In the popular novel The Perks of Being a Wallflower, Stephen Chbosky wrote “We accept the love we think we deserve.”  Sadly, sometimes because of our illness, we think we don’t deserve love.  We think we deserve to be treated like a burden, because we are one.  And that is a falsehood above all falsehoods.  Dear friends, let me take a moment to remind you that your value does not depend upon whether you have or don’t have lupus.   Your value doesn’t depend upon anything you have or haven’t accomplished in your life.  You are valuable simply because you are alive.  And if you choose to give love, you deserve to receive love.  

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Here are some excellent resources to help you excel at the Dating (with Lupus) Game

5 Love Languages

Aches, Pains, and Love: A Guide to Dating and Relationships with Those with Chronic Pain and Illness

And a big thank you to author J.H. Johnson of Diary of a  Mad Lupus Patient for sharing her thoughts with me on dating with lupus.  



Sources:, and a Big thank you to author J.H. Johnson of Diary of a  Mad Lupus Patient for sharing her thoughts with me on dating with lupus. 

Author:  Kelli Roseta

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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.