Valentine’s Day with Lupus is a Singular Experience

Ines Martins, PhD avatar

by Ines Martins, PhD |

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My Mountain, My Lupus column

Having lupus has meant a lot of missed holidays and vacations, but one holiday it definitely changes is Valentine’s Day. I choose to keep my circle of loved ones extremely close, as they all have to be privy to the ups and downs that go along with lupus. That typically means dating is put on the back burner for most of us diagnosed with lupus, myself included. Gone are the days of flowers and balloons. These days I am much more content with a full day to sleep in my recliner. Nestled in my arms is a heart-shaped box of chocolates.

My circle of friends may be small, but it’s mighty

I have a very intimate circle and I say that with the least of any intimacies. My circle knows everything about me and I them. They are a part of what makes me, me. From my two boys, to my two dogs, to my five best friends that span the continental U.S. One of whom loves me so much he even lives with me. Bless his heart, along with his clear lack of mental faculties to be shacked up with this hot mess. My immediate circle now closes itself off with the inclusion of about 10 close friends. These are the friends who know what I am up to through social media; we talk maybe once a month, but certainly not every week.

Do people still date?

Ah, Dating. The illusion that goes along with dressing up and hitting the town. Dinner and drinks, maybe take in a movie? Even sex takes a backseat when certain medications make your body react differently from normal. (What the hell is normal anymore?!?!) Do people even do Valentine’s Day anymore? Sometimes my mouth hurts so bad I couldn’t imagine kissing someone ever again. Sometimes my body hurts so bad, I wish someone was there to kiss it away.

Last year …

Last year I spent Valentine’s Day doing … Hmmm. I actually just now had to go back through my Facebook feed (no easy feat, I tell you) to find out exactly what I did last year. It turns out, I spent it much like I did this one. Happy and thankful for those in my life. Last year my mother was visiting for a month and while my son was quite sick with mono, we were all happy. My older son made breakfast and, while I know I was sick because my mother was there, that following week we had the best time of our lives. From searching for glass on the beach to wine tasting in northern California. How could I have forgotten those magical times?

Then I remember I have lupus.

We aren’t your average family

While we may not have typical holiday schedules and rituals, our home is one filled with love. We don’t need a Valentine’s or a day to keep us close to that ritual. And yes, I have chosen to keep my circle of loved ones extremely close, but that’s only because I need to rely on them more heavily. Theirs is truly a burden of love, and it’s a conscious decision each of my friends has made.

Dating isn’t the easiest thing, but when was it ever? I am finding that with care, it can be done. Carefully, which we sometimes forget, means to be full of care. These days I am still quite content with a full day to sleep in my recliner, but I don’t mind heading out for a night on the town occasionally, even if it’s a holiday like Valentine’s Day. As long as it ends with a heart-shaped box of chocolates hand-picked by — you guessed it — moi!

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.