I was diagnosed with SLE in my teens, long before I’d become sexually active. When sex became a part of my identity, instead of being a glorious whirlwind of sloppy kisses and knock-your-socks off orgasms, I viewed it as
yet another physical activity, I had to worry about! My bones popped so often, my husband and I joked that I had the ability to make love and make music at the same time. My toes and legs would stiffen from the uncontrollable muscle spasms; and forget about spontaneity, I could be exhausted one minute and achy the next.

But in all seriousness, sex is just another example of the challenges many men and women face as they struggle to live with a chronic condition. All of those romantic notions of being swept off your feet, or in the case of men,
carrying her into the moonlight, become ludicrous. We have real life obstacles to deal with, in maintaining our physical care and our emotional stability- like fatigue, achiness, impotency, shame, guilt and self-consciousness. Let’s not forget the side effects of our medications, which cause weight gain or loss, hair loss, and low sex drive. And there are our partners that we also have to consider. They may not have the same physical and emotional struggles, and it can cause a serious riff in relationships if the topic of sex is not handled with care.
In my trials and errors with sex, I have found four strategies that work in improving my outlook on sex and intimacy-
1. Communicate- Be open and honest with your sexual partner. Share with him or her your concerns and fears. Listen openly to their concerns as well, and see if the both of you can come up with a resolution that can satisfy
equally.
2. Plan ahead- Chronic illness makes spontaneity very difficult and can create a looming fear of not being able to perform on the spot. My husband and I have “date nights.” This is just another way we circumvent “bad timing.” You can prepare by taking warm baths with Epsom Salt or take a few over-the-counter pain pills to reduce stiffness and aches. Perhaps throw a light massage in the mix! See if your partner can pitch in more that day with the housework or with the kids. Planning ahead may not make up for spontaneity, but it does add to anticipation!
3. Learn to accept your body– Accepting how your body looks and feels is not only essential to maintaining a healthy identity, it will also reduce the anxiety of having an intimate encounter. You may have a few more lumps and bumps, and extra weight which may not be acceptable for you, but you must realize that not accepting yourself is communicated in your intimate relationships. If you are uncomfortable with you, it makes it equally hard for your partner to be comfortable. Realize that you are doing the best you can with what you have, so give yourself a break!
4. Know the side effects of your medications– The side effects to many medications, can reek havoc on the body, and it would be wise on your part to read your prescription bottles carefully. Some of the side effects listed on your prescriptions may not relate directly to sexual performance, but pay attention to side effects that read: dizziness, drowsiness, nausea, mood swings and dryness, since these symptoms will effect you even during your intimate times, so it’s best to prepare. You may need to use lubricants, change sexual positions, or consult your physician (in the case of impotency or soreness). It’s always best to be educated!
For people like us, who live with a chronic illness, we may need to activate a bit more patience and a whole lot of creativity when it comes to our “bedroom business”, but if there is a will, there is a way! You deserve intimacy and a healthy sex life like everyone else, and so does your partner.
Article written by by Keesha M. Mayes, Butyoudontlooksick.com ©2006