How Lupus Changed My Sex Life


How has my illness affected my sex life? Basically it has altered it just one way…

It destroyed it.

Oh, I know, you are already thinking don’t be so melodramatic. I toyed with the idea of whether I should even write about this topic as what I have to say may come off as bleak or hopeless, but then I thought perhaps someone else feels the same way but they are struggling with it and perhaps if they read my story they won’t be struggling so much anymore. Perhaps they can move on to acceptance. Perhaps.

Before I was diagnosed with lupus I was diagnosed with endometriosis about 15 years prior. Already my body was starting to have some real issues in the female region. My periods would last for two weeks, I’d go through a pad an hour and my cramps were so bad I required narcotics just to walk. Despite all that I managed to marry and give birth to three amazing boys. Fast forward to months past my last son’s birth and my endo was causing severe pain from scar tissue all through my pelvis and vagina walls. Sex had been starting to hurt for awhile by then but now it was getting unbearable. My only option was a total hysterectomy. I felt like a horrible wife as I rejected my husband’s advances more often then I accepted. I tried to do my wifely duties but it became increasingly more painful. I wasn’t ready though to have, what I thought at the time, part of my identity and what made me a woman removed from me. Forever. Though I wanted no more children, the thought of ensuring that would never happen made me sad. I struggled. I hurt. My marriage was crumbling.

When my youngest was 3 and a half my life changed forever. What I thought was stress, mommy burn-out and perhaps the flu cumulated into a diagnosis of lupus. Little did I know at the time I would never work again. I wouldn’t have sex with my husband again.

We tried, I tried. He waited. I searched my heart and soul. I am a wife, this is what I’m supposed to do. I didn’t expect my husband to go without sex. I loved him but before lupus, even with all the pain I could force myself to have sex because I loved him. After lupus though – my love never changed, but my priorities did.

My needs are basic. Each day I must wake, take meds, eat and tend to my hygiene. Most days I can meet those. Each day I must ensure my children wake, take meds (they have ADHD), eat and tend to their hygiene. Most days I can do that. That’s where the rest gets shaky: doctor appointments, errands, bills, school, shopping, activities for the kids, more appointments, therapy, gas, pharmacies, help with homework, clubs, dishes, cooking, sweeping, emails, phone calls, take a shower, give a bath, more shopping because I forgot milk, break up fights between boys, blood work from my doctor appointment, oh wait – son’s school called and they have no meds for my son so I have to go home and get it then…

I never can get it all done. My to-do list is always overflowing. I struggle with mommy guilt constantly. The thought that I brought these amazing beings in this world to raise, teach, love, care for and learn from… and every day I feel like I fail them.

What was the point?

Oh yeah, sex.

Lupus destroyed my sex life. I could care less about being intimate. I have no sex drive or sexual desire. Briefly, one day not too long after my diagnosis, I realized that as a woman in her mid-30s I should be in my sexual prime, and how sad it is that I do not have any sexual desire at all. None. Thankfully that thought was brief. I’m not lonely. I don’t feel unattractive. I’m not lacking affection. I can see a good-looking man and appreciate his looks. I just don’t need sex right now. I don’t know if this is temporary or for the rest of my life. Right now, either way, it’s OK.

It’s been five years now and I have not had sex, with anyone. I’m OK with that. There’s so much more to life. I struggle with chronic pain and fatigue. I struggle with a never-ending to-do list.

Now I struggle as a single mom raising three amazing boys. Though we are not legally divorced yet we have been separated for awhile. He moved out of the family home though just a few months ago. My boys are struggling with that. It’s been hard on them. I don’t blame my husband though. I still love him. I gave him permission to seek physical pleasure outside the marriage. He was going to but then said it just didn’t feel right. That’s when he decided to move out. I cried. He cried. As much as it hurt it was the best decision for both of us and the boys. Life is moving forward. I’m struggling, yes, with so many things. I’m also enjoying the simple things. Like singing to silly songs on YouTube with my sons, making breakfast food for dinner, having cake for breakfast with a tall glass of milk and watching my middle son who is 9 taking on the manly duties of shoveling the snow and salting the sidewalk when it snows and every time we go out he walks ahead of me and points out where the icy spots are and holds his arm out so I can lean on him…

We are going to be OK.

A friend asked me awhile ago, wouldn’t I get all hot and bothered if Brad Pitt showed up at my front door? Of course I would, I answered, he’s great with kids – maybe he can take the boys to the park while I try to get a nap. That would be so awesome. A girl can dream, right?

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