When I Asked My Husband Why We Stopped Having Sex as My Disease Progressed

I got married in 1990. At the time, I was in college pursuing a degree in education. I graduated in 1991 with a BA in Secondary English Education and a minor in Psychology. Afterwards, I went to work helping developmentally disabled children and adults. In 1996, I was diagnosed with the disease that would eventually become disabling.

No amount of reading, psychology, or education could have prepared me for handling the emotions I experienced as the disease progressed. Each new symptom brought more uncertainty and more pain. After 21 years of this continual roller coaster, I had developed the unfortunate habit of not sharing how I was actually feeling day to day or what new development had arisen. I thought I was sparing my family from knowing how much pain I was in or worrying about how far the disease had really progressed.

FYI: This is not a good idea.

Quick recap: I have been married for 27 years, sick for 21 of them, and slowly becoming sicker and more withdrawn about it. Meanwhile, my husband has been very supportive and has been picking up the slack as I have declined. But he has also been internalizing my pain. And because I wasn’t talking about it, he started to make assumptions about my pain and what activities would affect me. Suddenly, we weren’t having sex.

Yup. I said it. On live, written internet. S.E.X. The damn disease affected our sex life and we didn’t even realize it at first. I’ll add a disclaimer here — Sjogren’s syndrome can cause sex to be painful, but that’s not what I am talking about. The issue, literally, is talking. Or the lack of it.

You see, it finally took a few weeks and finally asking my husband what was going on to get to the bottom of the issue. And a big part of me didn’t want to ask at all. Seriously. I’m sick. I don’t need stress of any kind. And not that I had any reason to believe my husband was cheating, I’ve watched enough Lifetime Movie Network to know I could be opening a huge can of worms. But up until that point, our sex life had been great, so I had to ask. And to be quite honest, his answer stunned me.

Flashback sequence: My pain rests, for the most part, in my back, hips and knees — most likely due to spending my career sitting on the floor cross-legged and recently having fractured my back twice. That, combined with the amazing amount of rainy weather we’ve been having, has caused me to be in a lot of pain this summer. Even walking has been unusually difficult. Seeing that, my husband assumed that the act of having sex would also be painful for me. He loves me and didn’t want to hurt me in any way, so he stopped making advances and instead started letting me sleep as long as I needed on the weekends. That is, until I finally decided to ask him about it.

Now, I am happy to say, we are back on track. We had a long talk last weekend and apart from agreeing we both miss sex, we also agreed that we have to keep talking about my illness. I can’t hide it from him and he can’t be afraid of bringing it up to me. It is what it is and it will progress however it chooses. Neither of us can control that. We can only control our reactions and how we adjust to my new levels of ability.

But I also told him these decisions have to be mutual. And even though I understood and appreciated his desire not to cause me any pain, the decision to stop engaging in sex was not his to make. Just like the decision to use pharmaceuticals or herbal remedies, the decisions about what my body can handle physically are mine to make. I sacrificed myself to see my kids play hockey and baseball when they were little because I wanted to be there even though I knew I might be in pain afterwards. The same concept applies now.

I fully understand that as time passes, there’s a chance I will not be able to participate in sexual activity anymore. I sincerely hope not. But if that time comes, I know two things:

1. My husband and I will be able to talk it through first. And

2. He is already prepared to stay with me if I can’t have sex anymore.

Today’s lesson? Talk things out with your significant other. I wanted to shield him from my disease and its constant issues and he wanted to keep me from getting physically hurt. But we kind of hurt each other anyway. So it wasn’t worth the time and effort to begin with, was it?

Now go on, y’all! Get to bed!