About Lupus

Falling in Love — With a Chronic Illness Like Lupus

A recent post on our Facebook page inspired me so much that I want to revisit the topic of dating with lupus or any chronic debilitating disease. After you read what Steve Howard has to say about his experience dating a woman who had lupus, I think you’ll agree getting out there and being open to falling in love is well worth the effort!

I dated a woman that had lupus. Before we even had our first date, she told me she had lupus. She explained what it lupus was...and what it wasn't. Her lust for life and spirited fight against lupus was more than I could resist. We were... married on 06 May 2003.

It sounds very flippant to say this, but it really is true. If your date can’t handle the fact that you have lupus, then they are the ones missing out. Keep looking. You can do better.

People like that just don’t understand what lupus does to people. I’m not talking about the bad stuff. I mean the good stuff. The strength lupus patients can develop whilst battling their illness. The education they get as they explain this misunderstood illness. In some cases, they become the teacher and the doctor becomes the student.

They will miss out on you...and that really is a shame. My wife died on 24 February from complications of lupus. We weren't even married 8 years. But she changed me in ways I never dreamed. I shudder to think what I would’ve missed out on if I had said “You have lupus? Bye!”

Following is a column my predecessor at the S.L.E. Lupus Foundation, Danielle Hall, MSW, manager of social services wrote a couple of years ago is just as applicable today.  Basically, someone who is a “keeper” is someone who isn’t put off  by a challenge, whatever that may be.

Single with Lupus

Most singles agree: dating can be fun, frustrating, exciting, and dreadful at the same time.

But add a chronic disease like a lupus, and dating can become truly difficult and an overall stress. 

I’m here to tell you that although lupus may add a constraint on a relationship, it is realistic to date, have a relationship, and find love.

First, it’s important to admit to yourself when you are ready to start dating.

Your introduction to the dating world needs to be balanced and unhurried so you can maintain a feeling of self-assurance and self-respect. For example, if you are in the middle of a flare, or maybe changing your medication and experiencing side effects, you should probably wait until you feel better.

Think of dating as something like running a race: You want to prepare yourself and go in to the race with a positive attitude, excited, and strong—physically, mentally, and emotionally.

Here are some dating-related questions I often get. I thought you might like to see my take on them:

Q: I’m constantly exhausted from the lupus. How can I date when I feel this way?

A: We all know that the fatigue of lupus can be difficult to cope with. But dating doesn’t mean you have to stay out late and dance the night away! There are many date ideas that can accommodate your energy level: going to the movies, cooking a romantic dinner, or just watching television. The date isn’t the important part—it’s the company that matters!

Q: My lupus medicines don’t make me feel very attractive. What can I do?

A: Unfortunately, the medicines for lupus can cause unpleasant weight gain, hair loss, bloating, and other reactions. But keep in mind: most of the time, we are our biggest critics, so although we may feel unattractive, others do not see that side. If your confidence is low, remember all of your great attributes. Try talking to a friend who can help you replace your doubts with feelings of confidence and self-assuredness.

Q: When should I tell a potential boyfriend that I have lupus?

A: I think it’s important to be open and honest about your situation with any potential partner. That said, boundaries are important to keep in the beginning especially. Since everyone’s lupus is different, you have to decide when it is most appropriate for you to be open about having lupus.

Q: What if my date gets scared when I say I have lupus?

A: First, explain what the disease is about, and assure your date that it is not contagious or life-threatening. Brochures from the S.L.E. Lupus Foundation can help do the explaining for you, describing symptoms, risks, other important things a person should know about lupus. 

Give your date some time to process the information. Most likely, he’ll understand. And it’s natural for him to have questions and want to discuss concerns. 

If your date gets scared, and finds he cannot accept your condition, keep the following in mind: a meaningful relationship should be one that encourages and supports you in your struggle with lupus.

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