When Lupus Limits Physical Affection

By Ava Meena

2 min read

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 lupus treatment 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 represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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katebean Member
This resonated so loudly for me. Thank you for being able to express your love and your despair your illness has created for you. I also struggle with similar circumstances and I love my husband with all of my being. He’s my rock and best supporter and an infinite fountain of encouragement. I couldn’t live my life as comfortably(says the woman who’s currently rocking back in forth in a fit of pain) without him. He has been the very best caregiver and kindness is his superpower- though patience is catching up. He’s one in a million and the guilt and the anxiety we carry because we worry we are not meeting our loved ones needs and we are failing to be the mother or the wife we once were and we miss that woman as much as they do but if I’m honest with myself, I can gently remind myself that I am still that woman I have been hindered physically in many ways and due to the chronic pain and debilitating symptoms I have every day it would be foolish to even imagine I would be able to maintain the strength and the activities I was able to do before the disease found it’s way in. You and I must keep reminding ourselves we are still the loving and grateful woman our family adores and loves and that they DO understand and they aren’t upset with us so the guilt we are feeding is using energy we don’t have to waste. I’m learned ways to redirect those emotions and feelings when they do come to the surface and I am cognizant to express to my husband just how grateful blessed and amazed I am by his devotion and love for me and I spend a different kind of time with the kids now. Typically in my bed or laying on the couch it is a movie a game a discussion a book but it’s still activities for us to get together to do. It’s so difficult some days, believe me, I know. But please, try to go easy on yourself because your doing your best and that’s all anyone that loves us wants. It’s enough.
1. Ava Meena Moderator & Contributor
 <inline-mention user-id="2036242" username="katebean"/> , Thank you for this heartfelt comment. It means a lot to me to hear from someone going through the same thing, though I ache to hear about your pain and frustration. It has always seemed ironic to me, once I became chronically ill, that I suddenly had so much more to be thankful to my husband for and yet so little ability to express my thanks. How wonderful that your husband is an amazing and kind caregiver! It makes such a difference in our difficult lives. It’s great that you’ve been able to remind yourself that you are worthy, and to redirect the negative emotions. They often only pull us down further into guilt spirals, and we need all the limited energy we have to put towards better things, like playing games on the couch. 😀 Thank you so much for sharing some of your story with me. I hope your fit of pain is over soon and you can enjoy some time with your family. - Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team