Sex, Drugs and Rockin’ Lupus

You probably have heard the phrase “Sex, Drugs and Rock ‘n’ Roll.” I was used to hearing it as well as I grew up in the music industry in Los Angeles, with parents heavy into the ’80s rock scene. I grew up being told I was a rock star. No matter what industry or line of work I would go into, I would always be a rock star.

In spite of how I was raised, somewhere along the way I had forgotten what my dad had tried to instill in me as a kid: “Bridge, you will always be a rock star.” In fact, it was about the time that I was diagnosed with lupus that I really lost my way. I had lost my identity on that fateful day. In light of this mind-blowing self-realization, I changed my outlook, and therefore my phrase, from Rock ‘n’ Roll, to Rockin’ Lupus.

 While rock ‘n roll isn’t as taboo as it once was…sex and drugs are.

That’s especially true when you have lupus. Lupus is a disease that affects 5 million people worldwide. Lupus  is also known to be an invisible disease.  After looking for information and treatments, one has to wonder if appearance of the disease isn’t the only reason we call it invisible. That’s because once I was diagnosed I truly felt invisible, as I quickly tried to melt into the background of my own life.

I have been on “legal” drugs since before my diagnosis. From muscle relaxers and anxiety meds, to painkillers and immunosuppressants. Getting my diagnosis after years of being sick seemed like a miracle that I hoped would be the beginning of a solution. But the drugs have had to be constantly changed  because my body is changing, too. Beyond my emotional and physical suffering, soon my relationships began to suffer. You see, when your on this many medications, the last thing you think about as a single woman, or perhaps even a married one, is sex.

As a matter of fact, dating was crossed off my list altogether when I began taking Benlysta two years ago. How could I explain to someone that I may have to bail on a date because I was in a flare-up? Or, “Hey, did you want kids? I already have two and am not really in the mood for another high-risk pregnancy” or taking on the fear every woman with lupus has of passing it to her children.

I finally allowed someone in. And it nearly broke my heart.

I was convinced he could handle my being sick and we dated for almost a year. Unfortunately I was one of those who became really sick on Benlysta. And the sicker I got, the worse the look of pity that could be seen on his face. I feared it was just too much for him to handle. I watched his expression as I pushed and he pulled, allowing the gap between us to become larger and larger until it was a black hole where no light could escape. His calls were fewer and farther between. How I could I try to hold him down when lupus wasn’t something I would wish on my worst enemy, much less someone I loved and cared about?

Again, with the pushing and pulling, until we were nothing more than an oxy-induced memory.

The sex was the first to go. I mean, who wants to have sex when you constantly feel like crap? When either your body is aching, you’ve just thrown up, your skin is crawling, or all three are going on at once? Oh, please, sign me up! So, I let go of the sex and any hope of a relationship, and let the drugs take ahold of me. I was nowhere near Rockin’ Lupus, but knew I needed to find it. I had these vague memories of someone telling me once, “Bridge, you’ll always be a rock star.”

Above all else, I knew I couldn’t fight lupus alone.

Scratch that. I knew I didn’t WANT to fight lupus alone. It has taken me a long time to realize how truly special I am, and that, in spite of lupus, I am a damn good woman who deserves to be treated like a princess, yet allowed the freedom to be a warrior. So many of us warriors have given up on the one thing that should truly matter: Love and the relationships that surround us.

Sex is a part of giving yourself up to someone who loves you and will take care of you. While it isn’t easy when you’re looped out on so many meds, there are ways to calm the mind and make sure we are giving and getting what we need in our relationships. For me, the physical activity of sex makes my body feel better. But the emotional aspect of sex and having someone hold you and tell you “You’re beautiful” … that is the industry I want to live in.

There was a time where I lived for my career. Later I lived for lupus. I kept track of the days by monitoring my pill bottle and my next doctor’s appointment. While lupus may have control over my body, I realize now that it is me who has control over my heart and my mind.

In any way I can, I will rock this lupus just like I rocked my old life. I just tend to rock a bit slower. And usually in my favorite rocking chair.

Sex, Drugs and Rockin’ Lupus. One day at a time!

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.