“Because a person with lupus may experience bodily and/or emotional discomfort brought about by lupus symptoms, medicinal side effects, stress, and feelings of depression, the thought of having sexual relations may not be foremost on the person’s mind on the same day or moment their sexual partner is “in the mood.”
- Donna Oram, When Lupus Throws You For A Loop
The act of intimacy with your partner encompasses behaviors such as touch, caressing, stroking, conversation, eye contact, empathy, selflessness, and sex. However, when you are living with a chronic illness such as lupus, intimacy can be particularly challenging due to the pain, fatigue, and other issues lupus can cause.
In this blog, we are going to address some of the physical, mental, and emotional challenges that may hinder intimacy between you and your partner. We understand that not everyone feels comfortable talking about this subject. However, our hope is to begin a conversation to destigmatize any shame or embarrassment surrounding intimacy and sexual health and lupus.
The Physical Challenges to Healthy Sexual Function and Intimacy
One of the most difficult experiences of having lupus is that you can feel like your body has been hijacked, not just from the physical manifestations of SLE, but medication side effects and the multiple other lupus overlap conditions that can occur.
Studies in patients with lupus have shown that individuals abstain from sexual activity, avoid intimate relationships, and reduce their engagement in sexual relations when faced with medical challenges from their disease. There are many factors that impact sexual function that can present in both women and men living with lupus.
Some of the most common interrelated factors, include:
The physical manifestations of disease
Medication side effects
Factors such as mood changes, negative body image, depression, and other insecurities
Sjögren’s syndrome which can cause vaginal dryness and painful intercourse
Generally speaking, the worse the lupus symptoms, the more it may hinder sexual function and intimacy.
In women, physical effects may include:
Decreased vaginal lubrication (more than half of women who have Sjögren’s syndrome have dryness of the vaginal area)
Pain from muscular-skeletal involvement
Limited range of motion in hips, knees, back, neck
Weakness in joints
In men, physical effects may include:
Higher rates of impotence
The Psychological and Emotional Challenges to Healthy Sexual Function and Intimacy
Though sexual intimacy can be impacted by physical factors, studies suggest that emotional factors are the leading causes of sexual dysfunction with people who have lupus. One study determined women with lupus reported that depression and psychological factors were the primary factors contributing to a decrease in sexual function, including desire. Among this group, no other clinical factors related to lupus were shown to be significant with respect to decreased sexual activity.
People with lupus may avoid sex due to psychological factors that include the following:
Unhealthy body image/low self-esteem
Lack of desire and/or interest
Depression and/or anxiety
Inability to focus/concentrate/climax
Unhealthy Body Image
As mentioned above, often with lupus you can feel like your body has been hijacked. The changes that can ebb and flow with lupus can undermine (to say the least) having a positive
body image. For example, you may gain weight from being prescribed corticosteroids. You may lose weight from medications as well. You may lose your hair from lupus or due to a medication used to treat it. Moreover, you may feel self-conscious because of a rash, or a mouth sore, or a joint deformity. All of these can affect your view of your body image and perception of self.
“Talk to yourself like you would to someone you love.” - Brené Brown
TIP: Commit to your body in positive ways, such as making time for self care that you enjoy. Remember your value is not based on a number on a scale. Surround yourself with friends and family who support, respect and encourage you.
Lack of Desire and interest
When a person is experiencing a significant amount of pain and fatigue, vaginal dryness, and other physical symptoms, it is completely logical and a normal response to be less than enthusiastic to participate in sexual activities.
TIP: Communicate with your partner. Couples who learn to communicate in an open, honest way usually maintain a stronger emotional connection, which can lead to better sex. Talking about your likes and dislikes, schedule times to be intimate, and be open to talking about trying new things.
Depression and Anxiety
25% of lupus experience major depression and 37% of lupus patients report having major anxiety. Clinical depression and anxiety may be a result of the continuous ripple effect of emotional and psychological stressors associated with living with a chronic illness. Unfortunately, It is rarely talked about with lupus because often there are so many other issues that are prioritized before a patient's mental health. Changes in one's appearance and associated feelings about body image, worries about partner interest, and other challenges can also lead to illness-related depression and anxiety. This can, in turn, diminish sexual activity and intimacy.
TIP: Remember that fluctuations in sex drive are a normal part of every relationship and every stage of life. Spend some time nurturing yourself and your relationship. Make your mental health a priority, and talk to your doctor about your feelings.
From Your Partner’s Perspective
Unless you live in a bubble with no interaction with friends, family, or the outside world, your diagnosis will affect others around you. Individuals with lupus express concerns about whether their partner will leave them, no longer find them attractive, and view them as “damaged goods.” These concerns related to lupus may compound with other issues that couples deal with, including finances, boundaries with the in-laws, loss of jobs, stress of raising children, etc. All of this can have a detrimental effect on physical intimacy - not just on you, your partner may be feeling many different emotions as well.
Your partner is having to adjust to all the disease fluctuations that are happening to you too. Though a disease flare may bring about guilt, shame, anxiety, and resentment or blame on you, your partner may be internalizing some of the same feelings as well. In these times, your sexual relationship can suffer if you are both not honest in sharing these emotions constructively. Talking about sex can be challenging, especially if you’re not used to it. If you’re having trouble communicating with your partner, consider seeing a therapist.
Ways to Help Improve Sexual Function and Intimacy
Studies show that sex can reduce stress, improve sleep, and help to cultivate satisfying partner relationships. That is why it is important to address any issues that are hindering healthy sexual function and intimacy.
Here are some tips to make sex more comfortable.
Take a warm shower or bath to relax your muscles
Spend time on connecting through foreplay, touch, eye contact
Use a safe lubricant
Do Kegel exercises — this can increase blood flow and help with arousal
Try different positions or make physical adjustments, like using pillows for support
If sex is uncomfortable or painful, talk with your doctor. They can check for any additional medical conditions that might be causing problems and suggest therapies. It is also very important to talk to your partner about any discomfort during times of intimacy.
Try using these tips:
Use “I” statements. Tell your partner what you love and what you don’t. Try “I” statements like: “I like it when we…” or “I feel some pain when…”
Be open. Talk with your partner about how you’re feeling, both physically and emotionally.
Plan ahead. Picking a time and place for intimacy may not seem romantic, but being prepared can actually make things go a lot smoother — and a lot more enjoyable as a result. source LFA
Each of us differs in the ways that we receive love. By learning to give love in the ways that our partner can best receive it, and by asking our partner to give us love in the ways that we can receive it, we can create stronger relationships.
Investing in discovering your partner's "love language" and understanding your love language as well is very helpful.
If you are unfamiliar with the Five Love Languages, they are:
Words of Affirmation - Saying supportive things to your partner
Acts of Service - Doing helpful things for your partner
Receiving Gifts - Giving your partner gifts that tell them you were thinking about them
Quality Time - Spending meaningful time with your partner
Physical Touch - Being close to and caressed by your partner
Other helpful methods:
Sex education and counseling: Talking with a sex therapist or counselor skilled in addressing sexual concerns can help with low sex drive. Therapy often includes education about sexual response and techniques.
Medication Adjustments/Additions: Your doctor will want to review the medications you're already taking, to see if any of them tend to cause sexual side effects. For example, antidepressants such as paroxetine (Paxil) and fluoxetine (Prozac, Sarafem) may lower sex drive.
Hormone therapy: Dryness or shrinking of the vagina, one of the hallmark signs of genitourinary syndrome of menopause (GSM), might make sex uncomfortable and, in turn, reduce your desire. Certain hormone medications that aim to relieve GSM symptoms could help make sex more comfortable (source: Mayo Clinic)
Having sex may feel and look different when you have lupus — but many people with lupus find that they can have a safe and satisfying sex life. Being on the same page as your partner is key. I started this blog with some insights from Donna Oram’s book, “When Lupus Throws You For A Loop” and I would like to close with some as well:
“As with every other change you and your significant other experience due to you having a chronic illness, there will initially be a period of grieving for your healthy self and your pre-lupus sexual and intimate relationship. This is also part of your journey with lupus. Yes, you will ultimately accept the changes in the intimate and sexual aspects of your relationship. Yes, it will take time. Yes, it will make adjustments. Yes, it will require attitudinal changes. And yes, you may not always like it. But if you both truly work on your relationships together, you can reach a new level of intimacy.”
- Donna Oram, When Lupus Throws You For A Loop
Kelli (Casas) Roseta
When Lupus Throws You For A Loop, Donna Oram, MSW, ACSW Copyright 2017
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2021.