5.2 Pain and Intimacy
By Megan Tudor Donnelly, DO (USA)
Relationships are complex. They require time, honesty, patience, understanding, and emotional investment to succeed. Romantic intimacy is a fundamental aspect of human relationships, providing physical and emotional connection and fulfillment. However, trigeminal neuralgia (TN) pain can be triggered by even the slightest touch, such as a gentle kiss or caress. To approach the subject of romantic intimacy with TN, it is crucial to understand the condition’s impact on the individual’s life.
When one partner is living with a chronic pain condition such as TN, it can pose unique challenges to maintaining a healthy and satisfying romantic life. In this section, we explore how individuals with TN and their partners can approach romantic intimacy with care, empathy, and understanding.
Dating. There are certainly many people with TN who are single or dating. Having chronic facial pain can make finding the right partner challenging, but it is still possible. Even though TN can limit a person from doing activities that they might otherwise enjoy doing, such as staying out late, singing, dancing, going to loud places such as concerts, or doing activities in windy conditions, there are other activities and ways to meet a partner that do not involve these activities. Finding groups for new hobbies or interests, such as yoga, museums, acrylic painting, or a sci-fi book club, is a wonderful way to not only learn about new hobbies, but also make friends and perhaps meet a future partner.
Communication is Key. Open and honest communication is the foundation of any successful romantic relationship, especially when one partner is dealing with a chronic condition such as TN. Both partners should feel comfortable discussing their needs, concerns, and boundaries. If you meet someone new and are considering a relationship with them, I recommend being up-front with them about your medical condition and how it affects you. This is deeply personal information, and understandably, it is not the thing that you might want to tell a person on the first date, but if you foresee a future with them and want them in your life, they should know. You should use your discretion for when the timing feels right to discuss your health. As a blog post on facepain.org from April 15, 2021, states, “Romantic partners may eventually become caregivers, so it is important that they know the challenges you face. And if being in a relationship with someone who has facial pain is not something they can handle, then they are not the right person for you” (https://www.facepain.org/blog/helping-your-relationship-survive-despite-facial-pain/) . If you are in a relationship, ongoing communication makes it easier for your partner to understand what you are going through, what your triggers are, and what you feel capable of doing at a given time. For example, you might have plans to go to the beach, but if it is too windy, you might need to change your plans. If your partner understands what you are going through, they will likely be more supportive and understanding of the need to change plans.
Remember that communication goes both ways, so your partner will need to have open communication with you in return. As discussed earlier, your partner may be your caregiver from time to time. They should have the opportunity to discuss how TN affects them, their needs, and their feelings. It is understandable if they may feel overwhelmed at times. That does not make them a bad partner, nor should you be made to feel like a burden for having your condition. Therapy or couples counseling can be beneficial to work through these complex emotions. As suggested on facepain.org, “make sure your partner has ‘time off’ every so often to take care of themselves, too. It is not just the person with facial pain who is going through this awful experience; partners, family, and devoted friends are along for the ride, too” (https://www.facepain.org/blog/helping-your-relationship-survive-despite-facial-pain/) .
Educate Your Partner. If you have TN, take the time to educate your partner about the condition. Unless your partner has a background in health care, they might have extremely limited knowledge about TN. Share resources and information to help them understand what you are experiencing, both physically and emotionally. They will need to learn about the condition, triggers, treatment, and what to do (and what not to do) during an attack. You may want to invite your partner to attend doctor’s appointments with you, as this is another way they can learn more about your condition, hear your physician’s discussion and plan, and gain further perspective on how you are impacted by TN.
Regarding medications, it is helpful to educate your partner on potential side effects of your treatment. Many of the medications used for TN cause sedation, foggy thoughts (encephalopathy), mood change, or sexual side effects. Your partner also needs to understand that, although the goal of medication is for it to help with pain, it is not a cure-all. I have seen many partners who are trying to be supportive but have inappropriate expectations and overt frustration that a medication did not entirely eliminate pain and cure their partner. Pain relief can be incomplete, and breakthrough pain when medication wears off between doses can occur. More serious, but rare, side effects and risks also need to be discussed: What if a partner sees a new rash on you after you have started a new medication? They need to be educated about the risk of potentially life-threatening conditions such as Stevens–Johnson syndrome.
Timing Matters. TN pain can be unpredictable and vary in intensity. Be patient and flexible when it comes to intimate moments. Timing can make a significant difference in the comfort and enjoyment of both partners. For example, there is often a refractory period after a pain attack, in which the threshold to experience pain is greatly increased. In simpler terms, this means it is much more difficult to experience another pain attack during this refractory period that occurs right after an attack. One can harness the refractory period as a time to, for example, kiss their partner.
Likewise, when someone is going through a more painful time, whether it be a few minutes or even weeks, granting oneself emotional permission to avoid touches on that part of the face is quite reasonable. It is still always helpful for you to remind your partner that you still want them and appreciate their affection, but that you need to avoid ending up in worse pain. Your pain can fluctuate, and the unpredictability of TN pain can be a roller coaster for you and your partner.
On the other side, I recommend acting with spontaneity if you are having a good day. TN can steal so much, but when it is a better day, do not let it steal your joy. Take that opportunity to make last-minute plans with your partner. As recommended by facepain.org, “Suggest you see that movie your partner has wanted to see. Go for a walk because the weather is nice (and not windy). Show affection when you are willing and able to receive it. This can alleviate potential uncertainty on your partner’s part” (https://www.facepain.org/blog/helping-your-relationship-survive-despite-facial-pain/).
Intimacy Reimagined. For many individuals with TN, certain sensory experiences can trigger pain. Work together with your partner to explore alternative ways to express affection. This may involve discovering nonpainful areas to touch or experimenting with several types of physical intimacy. Remember that romantic intimacy is not solely about physical affection. Intimacy quite literally means a close, familiar, and usually affectionate or loving personal relationship with another person or group. Emotional connection, verbal expressions of love, and quality time together are equally important components of a fulfilling romantic relationship. I spoke with one patient, who developed TN very shortly after her wedding, and she and her husband described how, as a result of TN and having to resort to other love languages, they have a very “flirty and cute” relationship, with a lot of hand holding, arms around each other’s waists, and flirting banter, as a way to show their love and affection without focusing on what they do not have. This is reiterated by Jennifer and Dan Digmann (Jennifer and Dan both have multiple sclerosis, and Jennifer has comorbid TN) in a blog post on msfocusmagazine.org: “We no longer could kiss on the lips, but we soon found new ways to express intimate feelings for each other. Tighter and extended hugs, falling asleep while holding hands, and Dan’s gentle kisses on Jennifer’s forehead were the expressions of love that sustained us. These simple and meaningful acts actually pulled us closer together emotionally than we imagined was ever possible. Maybe it was because each act was rooted in the shared understanding that we are strongest when we’re together” (https://msfocusmagazine.org/Magazine/Magazine-Items/Posted/Intimacy-and-MS-Make-It-Your-Own.aspx) .
Emotional Support. Individuals with TN should prioritize self-care and coping strategies to manage pain and stress. Partners can play a role in helping their loved ones practice self-care, whether by assisting with relaxation techniques or simply being there to listen. It is best if your partner has patience, flexibility, and adaptability to accommodate your needs and expectations. Your partner can also help to encourage you to pursue hobbies and activities that bring you joy and fulfillment. Living with TN can be emotionally challenging. Chronic depression secondary to severe pain is common and should be actively addressed. Depression worsens pain, decreases libido, or both. Ensure that emotional support is readily available for both partners. Consider seeking the guidance of a psychotherapist or counselor who specializes in chronic pain and its effects on depression and relationships.
Your partner can be your advocate, particularly if you are not feeling heard by your physician. Partners can be your ally and another voice to speak for your needs and ensure that you receive appropriate medical attention, including seeking a second opinion if needed.
Caring Too Much. Although we all want an incredibly supportive partner, there are pitfalls when a romantic partner is overly enabling and if the focus of the relationship centers primarily on pain. This can encourage avoidant behavior, which can lead to stress and social isolation. This, in turn, can exacerbate limitations you place on yourself and create a dependent relationship. Dependency on your romantic partner is destructive to your self-esteem because it can reduce your sense of personal agency. Both you and your partner should encourage independence. Also, if conversations frequently focus on your pain to the exclusion of other topics, the relationship can falter because other relationship-maintenance issues are not being addressed. One way to avoid this pitfall is for your partner to not mention your pain and to avoid asking you if you are in pain if you have not brought it up. You need encouragement, not a constant reminder. Know that it is entirely acceptable to express when you experience intense pain. As advised by Leesa Scott-Morrow, PhD, on facepain.org, “As soon as you are able to authentically move away from focus upon your pain, do so. This will be reassuring for you and for your partner.” She goes on to explain: “Understand that this experience is as terrifying for them as it is for you. Their experience of helplessness can be as great as yours” (https://www.facepain.org/blog/face-pain-relationships/) . Your partner can also help to gently counter a spiral of negative or catastrophic thinking with reasoning (although psychotherapy is also often needed to unpackage catastrophic thinking). Staying active and motivated is incredibly important for your physical and psychological health if you have chronic pain. You need to maintain as much normalcy as you can, which includes staying involved in social activities and maintaining a routine, including keeping to a sleep–wake schedule, even if you are not presently working. Dr. Scott-Morrow states, “Work to retain activities that bring you pleasure and infuse your life with meaning” (https://www.facepain.org/blog/face-pain-relationships/) . Make a point to actively try to participate in life, not just passively survive it. Avoid having your partner fall into the role of primary caregiver unless you need it. For example, after microvascular decompression surgery, try to limit the time of them in this role to what is needed and not to extend it further. If you can do something yourself, you should. Do not confuse caregiving with love or romance. Although there is overlap in the two concepts, they are separate things.
When To Move On. A partner who encourages and motivates but pushes you too far or feels that toxic positivity is the answer, or alternatively, a partner who enables pain behavior and encourages dependent behavior and panders to your pain—both are ultimately unhelpful and problematic. However, either of these partner behavior patterns can at least usually be remedied with education and couples psychotherapy because both come from the same place: care and concern. But what if a partner is overtly annoyed, unsupportive, belittling, and minimizes or disregards your experience? Or what if they make you feel guilty or unworthy of their love? These are massive red flags and reason to part ways and get out of that unhealthy relationship. You deserve better. Do not stay in a relationship with someone because you fear being alone or because you depend on them as your caregiver if they are otherwise not good to you. If they are not good to you, they are not good for you.
Better Together. The perception of pain is not just physiological but also psychological. Pain reception is mediated not only through the thalamus but also through higher cortical processes. Pain perception varies to some degree based on someone’s state of mind. The best example of this is the experience that everything can hurt more—an example of allodynia—when someone is experiencing depression. But did you know that relationships can also affect pain perception? Research shows that patients in a relationship generally report less pain; they function better and are less likely to suffer from depression than patients who are single. Dr. Scott-Morrow explains, “Studies show that chronic pain patients experience lower levels of pain on days that begin with a sense of being happily connected to their partners; thus, relationship status can affect the patient’s experience of pain on a day-to-day basis” (https://www.facepain.org/blog/face-pain-relationships/) . However, the research suggests that the pain-related advantages of being in a relationship apply only to those in happy, satisfying relationships, “and even then, not in every case. When relationships are weak and distressed, pain patients tend to do poorly. They report more frequent and intense pain and show higher levels of disability.” Patients in happy relationships with enabling partners also reported greater pain severity than patients in happy relationships with partners who were not enabling. This is another reason to aim for a happy, healthy, supportive relationship that fosters independence and brings out the best in each other.
Conclusion. Romantic intimacy can thrive despite the challenges of TN. It requires understanding, patience, and adaptability from both partners. By fostering open communication, seeking medical advice, exploring physical intimacy that does not exacerbate pain, and focusing on emotional connections, couples can maintain a loving and fulfilling romantic relationship while managing the impact of TN on their lives. Try to add levity to your day and encourage your partner to talk to you about non-pain-related topics, such as something funny they experienced that day. It is critically important that you continue to seek intimacy and emotional connection in ways that have nothing to do with pain. Aim to create a sense of normalcy in your life and in your relationship. A true partner will be there for you when you need it and when you need to talk about your pain experience and how it is affecting you. Such a person is along for the ride of both the good and the bad, in sickness and in health. But they also encourage independence and personal agency. And they should have permission without retribution to redirect you if you are in a spiral of catastrophic thinking. This is true for all relationships, but it is even more important when one’s health is put to the test with TN.
Remember: Even though you have TN, it does not define you. You are capable and competent, and you have influence on your own life. You are still inherently the person you were before facial pain started. TN does not own you. You, being you, have something great to bring to any relationship.
Author’s Note: When I was researching the topic of TN and intimacy, PubMed revealed zero relevant articles with any combination of the following search words: “intimacy,” “romance,” “sexual,” “trigeminal neuralgia,” and “facial pain.” There are a couple of very insightful blog posts on the topic, as referenced in this section several times. But ultimately, this section could not have been written without the wisdom and insight of my many patients with TN who graciously shared their vulnerability and firsthand experiences in navigating romantic intimacy while living with TN.
