In How I Have Sex, we bring you candid retellings of people’s sexual lives that explore the multidimensional nature of this human experience. In this installment, 30-year-old A. talks about navigating sex life with lupus.

I have lupus nephritis — it affects my kidneys before it affects my bones, so to speak. Physically, I had arthritis when lupus was at its peak. My body used to ache all the time, my joints used to ache all the time. [With my condition], arthritis symptoms come in when it’s gone beyond measure. But my symptoms are usually very intrinsic, they rarely affect my body until it’s too late. Physical pain for me in lupus is not as high as in other patients, though.

I was in the seventh standard when I was diagnosed with lupus. I was a kid — 12 or 13 years old — so I barely understood anything around it. My entire sex life has only existed post-lupus, I got lupus before I had knowledge about sex.

My first association with sex started off in school. As we went through puberty, guys around starting cracking jokes about sex, started talking and hinting and all the winking started happening. [Since] I had lupus when I was in school, so I missed out on a majority of things while in school. I was a very late bloomer — I missed out on all the teenage things. I kind of also got cheated from the sex conversation, or the random, teenage sex banter that happened in school, or other important things — like the sex education day that happened in school.

But I actively started thinking about sex when I read Mills & Boon books, around the ninth or 10th standard. Some of them had pretty steamy shots describing sex scenes. I vividly remember being turned on and thinking, “Oh, this is what happens really.” The first time I masturbated was when I was in 11th grade. Since things were stable in my life with lupus, and I had more exposure and was discussing things and watching the American Pie series, that’s how I figured out there is a way to masturbate. I wasn’t exactly scared to masturbate bcause of lupus.

Since I’m on a lot of medications all the time, it changes the way I look, right? I’m on heavy steroids when I have a flare, so I instantly gain a lot of weight. It affects the way I look and the way people look at me — which includes boys and men. I’m always very conscious if I’ve had a flare; it automatically reduced talking to guys or hanging out with guys. Or I was just always very conscious if I had to get intimate with a guy. That is also something that affects me — especially for someone who doesn’t understand the complications of lupus, who doesn’t understand why you look a certain way and why in a few months you look different.

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I used to have pain initially when I started having sex, and it used to take me a lot of time to be comfortable with the penetration. I always thought it was because of the initial stages of sex — but I started reading about it a bit more. I still have pain, but I’m not sure it’s because of lupus or because of my mental inhibitions that come with lupus. The initial stages of intercourse used to be quite painful for me as compared to what I’ve heard from some of my friends, definitely.

But I cum as easily as any other woman. The frequency of me cumming does not have a lot to do with lupus, but the mind-block; that I couldn’t cum easily used to be linked to my body image issues, which was a direct impact of lupus. Lupus has always been a factor in determining who I was comfortable enough to share that experience with. Even choosing my partner to have sex — vaginal sex — was huge. My friends used to think I’m a prude, but this was the actual reason.

I have had penetrative sex only with my husband. Being intimate with a guy, apart from the mental inhibitions that come along with lupus, was always a factor in deciding who I have sex with. I’ve had sex when I had a lupus flare — lupus had no physical manifestations at that time. In the initial years of lupus, I used to be lethargic and in some pain.

When my lupus is in an active stage, it affects my kidney, so I have had to have a kidney biopsy to know what stage lupus is in, so that I can have the right treatment. If I get a flare, and I have a biopsy, that physical pain definitely prevents me from having sex. The last time I had a flare, during 2015-16, I had a biopsy, and because of the physical pain, post-biopsy, I couldn’t have sex.

My doctor has advised me not to take birth control pills — and that is also a major consideration for me while having sex because it has to be very cautious. We can only use certain forms of protection (condoms). Contraceptive methods for us are different because the amount of caution we have to maintain is different. I cannot risk having an unplanned pregnancy because the medicines I’m on currently are not suitable for pregnant women. If I have an unplanned pregnancy, it would be very dangerous to my health, and I wouldn’t be able to have the kid. Caution, and making sure nothing goes wrong during sex, are always at the back of my mind. Sex is very different in that sense; we can’t just jump into wild things whenever we feel like it. It has to be a bit planned.

My sex drive is pretty good. I love foreplay. In bed, I prefer my partner to do all the work. I love role-play during sex, and my partner is also into it, so we experiment a lot. My usual pleasure centers are breasts, down there [vagina] — even my back is a major pleasure center for me. My partner really enjoys it when I go down on him; that is even something I enjoy. Both of us like to be tied up; he likes to be the one who is dominating. So most of our role plays are around it [BDSM]. I like to be the submissive one. That’s the usual thing we go with; if we are being too adventurous, I become the dominating one, which he loves.

Thanks to Covid, I’m masturbating often, because I started living with my parents and living separately from my husband — so that’s my only saving grace. I’ve never used a vibrator, but I’m really looking forward to buying one.

In terms of being confident in my body, in terms of being open about what I like and I don’t like, that has adapted over the years. My medicines have reduced a lot; I’m not as overweight I used to be — that makes me feel sexy, attractive, good enough to not let it affect my sex drive. This time, my lupus is in remission, so luckily lupus never becomes a part of all of these things.

This interview has been edited for length and clarity.