Is love after lupus possible? As in any other relationship, open communication is important. Additionally, it is important to focus on emotional and physical intimacy beyond just sex. What makes love after lupus different is that it requires that one be willing to adapt to the challenges of this chronic condition. So, how does one keep the romance alive?
What is lupus?
Lupus is an autoimmune disease where the immune system attacks the body’s tissues. It is a chronic illness that can cause inflammation and affect the kidneys, brain, joints, skin, lungs, and blood vessels. Lupus may affect internal organs and cause pain in the joints and muscles. Symptoms are not always visible, but the pain is real and can affect function, energy, and mood.
Looking fine on the outside and the unpredictability of its flares (times when symptoms return or worsen) can make living with lupus complicated, and intimacy after lupus even more complicated, given the disease’s ups and downs. Symptoms (like fatigue, chest pain, or joint pain) and some medications used to treat lupus (which can have side effects like vaginal dryness or low libido) can even make sex painful. During a flare-up, it can hurt to be touched. In addition, there can be miscommunication, like thinking your partner is no longer attracted to you when the reason they are holding back is because they don’t want to hurt you or to cause you more pain.
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What makes intimacy challenging?
Imagine attempting to be intimate while dealing with joint and muscle pain, which can make hugging your significant other difficult. Finding a comfortable sexual position and expressing spontaneity can range from challenging to nearly impossible, especially with restricted hip and knee movement.
Another issue could be having enough energy for sex despite dealing with the above. Fatigue would be yet another barrier to face.
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What about if your partner is in the mood but you are experiencing erectile dysfunction? Vaginal dryness might require getting used to using a lubricant every step along the way of your sexual encounter as a person living with lupus. Yeast infections can put certain forms of intimacy on hold. And genital sores could stop sex before intimacy has the chance to start.
Other physical effects can be mouth sores, weight gain or loss, and loss of appetite, which could eliminate a dinner date as a fun treat due to the unpredictable nature of this chronic condition. Rashes and hair loss can also occur.
Certain common mental health issues with lupus are understandable given the challenges of intimacy. One could experience a loss of desire and interest in sex. The impact on intimacy, on top of all of the other unpredictable symptoms, triggers, flares, and medically related side effects, could lead to depression, anxiety, body image issues, and lower self-esteem.
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The hidden fear
The mental health piece of having love after lupus deserves attention. Many chronically ill individuals strive hard to keep up the outside appearances of looking okay if they have a chronic condition that is not visible. Fear of always being seen as a patient by loved one-caregivers or being abandoned after that same loved one-caregiver tires of dealing with a chronically ill spouse or partner is a real fear.
Understandably, anxiety can develop around being left by a loved one, a caregiver who eventually tires of having a chronically ill spouse or partner. The amount of effort it takes to pretend to feel fine and look and act the part when suffering tremendously inside is an enormous burden to bear. No one should have to suffer in silence, but many do.
This fear indicates low self-esteem and depression, which the loved one, such as a spouse or partner, may not fully understand. Managing symptoms but not managing mental health is an unbalanced way of viewing love after lupus. For those in a relationship, there is the fear that they will lose it due to the unpredictable nature of the chronic condition that is lupus. People without a partner who have a lupus diagnosis may fear they may never find a relationship due to the demands this condition places on a caregiver.
Love after lupus is as much an internal mental health struggle as it is a chronic condition with unpredictable yet painful symptoms that make physical intimacy complicated and emotional intimacy limited by issues affecting mental health.
Keeping up appearances can cause one to create a wall of depression and low self-esteem that is guarded by anxiety. Those who want a relationship after lupus doubt it could happen for them in the first place. If they were in a relationship before lupus, they doubt that it will last because of all of the necessary support and patience required of the loved one-caregiver as spouse or partner.
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Preparing for sex
Planned sex is, well, not ideal, but it helps make sex possible under careful, optimal circumstances for couples to connect. Couples can go on a romantic getaway together in their own city to keep the romance going. Getting rest before sex is a priority. There is also the option of taking pain meds one hour in advance of intercourse, after checking with your doctor.
To be at your best, some tips include taking a shower or bath to relax sore muscles. For those with arousal trouble, doing Kegel exercises to increase blood flow to your genitals to make it easier to get aroused is suggested. Using a water-based lubricant for vaginal dryness is also helpful if needed.
Gentle reminders
As things become more sensual, remember to spend at least 30 minutes before sex on foreplay. Use lubricant for vaginal dryness. Try out different sexual positions until you find those that are most comfortable. Put pillows under sore joints. Explore other types of touch like hand-holding, massage, kissing, cuddling, caressing, oral sex, and masturbation. Let creativity expand the ways you express intimacy physically.
By practicing the above tips from talk to touch, having love after lupus is possible. However, it can require a lot of communication and planning beforehand to create the best chance for sexual success.
