When Lupus Limits Physical Affection

Do you know what my husband needs? A hug. A reassuring hand on his arm. A gentle back rub. All simple physical gestures, and all too frequently beyond my ability.

That seems absurd, doesn't it? That a hug is beyond my physical ability? But sometimes my knees hurt so much that the thought of standing for one more second than absolutely necessary sends me into a tailspin.

My lupus pain creates fear

When my pain levels are high I am prone to feeling panicked and I often shut down. I get anxious if my husband tries to hold me because he might inadvertently press on a swollen joint or sensitive tendon. He can be a tad clumsy.

I'm afraid he will bump into me in the hallway when I'm having trouble standing upright. If he comes too close he might accidentally step on my aching toes. So I distance myself from him. And what starts as moving away from him due to pain begins to create a gap between us in all areas of our life.

It doesn't help that my pain levels have been extremely high for about 4 years. Even though I was diagnosed 3 years ago and began treatment, most of the pain is still with me. Being in severe, chronic pain makes it hard to enjoy anything and takes a huge emotional toll on my marriage. I’m frustrated about the nearly constant pain and my husband is frustrated that I’m so absent from his life due to my lupus.

The pain and fatigue disconnect us

I'm physically separated from my husband during a lot of his free time. When he is done with work and able to be with our son I often head upstairs to rest. I can't provide physical affection from a different floor of our home.

The assortment of ways that my pain has prevented our physical interactions and intimacy is monstrous in length. Sometimes I can't provide a simple back scratch because my fingertips feel like they’re on fire. Or I’m unable to hold his hand as we fall asleep due to my elbow's fierce dislike of the angle required.

Fatigue plays a role as well. Like one rusty old engine in my child's favored book, I find myself saying, "I can not. I can not. I can not."

At times I am truly too tired to lift my arms and wrap them around him. It may seem hard to believe, but many people with lupus know exactly what it feels like to be that tired.

I am weary of seeing my husband want something that I am unable to provide. I’m also angry that my lupus is causing him pain in this way. He is kind, patient, loving, and emphatic, but he is also aching for affection and feeling discouraged.

I want things to change

I'm tired of my mind wanting so many things that my body can’t fulfill. And that's why I'm trying yet another in a few weeks. Like many of my other treatment endeavors, it's not something I truly want to do, but something I do in the hopes it will bring me back to myself, my husband, and my life.

I have to hope that there will be change. I have to believe that things will somehow, someway, get better. I know others have walked this road before me and many will follow. It feels like lupus has a stranglehold on my life, but I will keep trying to change that.

This article was originally written by Ava Meena and published on our sister rheumatic community, Lupus.net.