The Truth About Navigating Chronic Pain in Relationships

Ten years ago, Serena's doctor told her she was experiencing "growing pains," but her discomfort soon became chronic. She was also chronically dealing with doctors who didn’t believe her. "Over the years, I've had extreme fatigue and haven't been able to put on adequate weight,” Serena says. “I've been misdiagnosed with eating disorders and Lyme disease, and I finally found out after years that I have chronic fatigue and pain related to my joints."

After years of living through agonizing aches, Serena says, "I've taught myself about what I need, and how to advocate for myself." She's done this with doctors and in school, but "funnily enough, dating is the area I find these lessons hardest to implement," she says. 

"There have been times when my partner wouldn’t believe I was not okay because there's huge stigma and misunderstanding around what chronic pain is and what invisible disabilities are,” Serena recalls. “I have progressed beyond dating people who think that way, and I'm fortunate to have recently dated people who understand that you can be disabled and not look it." 

Still, it's been a struggle. "Sometimes, early in a relationship, it's difficult to be transparent about what I'm able to do and what I can't," Serena says. "It can be hard to communicate, and sometimes people just assume you're not interested if you cancel or say no to plans because you're having a flare-up or a migraine. What I've tried to do is make sure to say, ‘This is not because of you, but because of what my body needs.’"

Serena also tries to find alternative digital ways to engage when she can't show up for a date physically. "If I can't leave the house, I might suggest we Zoom or do a Netflix party," she says. "This makes it clear to the person that you're still interested. But I've also learned that if someone I'm seeing doesn't handle it well when I cancel, I probably shouldn't be dating them. I know I'm worthy of a partner who's supportive and caring of my needs. A lot of us are forced into the role of being self-advocates, but you should have a partner who is supportive, attentive, and responsive." In other words, you shouldn't have to play that role with people who care about you. 

More recently, Serena started seeing someone who's understanding of her chronic pain, and the realities of navigating it. "I believe the relationship has been successful thus far because I've been very upfront about my pain since the beginning," she says. "It was scary and challenging to do at first, but it's been 'high risk, high reward.' I've been honest and open, and they've been empathetic, caring, and compassionate. We all deserve that." 

"Endometriosis has haunted me since I was about 15, and I consider it generational," Virginia says. Her mother also experienced endometriosis-like symptoms in the early ‘80s, but Virginia says such a diagnosis wouldn't have been possible at the time in Venezuela, where her mom lived. She watched her parent have both of her ovaries removed and, later, a hysterectomy. "My mom's own medical trauma and difficulty in getting help shaped my own journey," Virginia notes. "I also grew up in South America, and, like many, I didn't get an annual checkup or women's wellness checkup until I came to the U.S. by myself at 21." Soon after, she met her future husband at a youth group Bible study event at their local church in Florida. "Intimacy was always one of our foundations — then we began having challenges in our sex life, largely due to my endometriosis," she says. "Although I wanted to have sex with my husband and I would get turned on almost as often as him, my constant pelvic pain and bloating made intercourse less than desirable. I also experienced low libido and dryness." It only got worse.

Throughout the years of pain, Virginia tried tons of pain medications and birth control pills, and went to various gynecologists. "I've been desperate to reconnect with my husband and get intimate with him again," she says. "My husband has never pressured me at all to have sex, and when we do, he's really careful and checks in with me about how am I feeling. However, if it’s not vaginal or anal penetrative sex, generally, he's not been too interested. He'd rather cuddle, and I worry he believes sex is only 'great' if it's penetrative." The couple talked about where this idea came from and attributed it, in part, to pop culture typically showing penetrative sex as the ideal.

Virginia and her partner are still learning to communicate about this, and working to find new ways to pleasure each other. They've tried oral sex, masturbating each other, and even steamy, long makeout sessions, but, to Virginia, it often "feels like a downgraded version [of sex]," she says. "This is our only option because penetration is too painful, rather than a choice. It feels discouraging — somehow I wish it would feel like enough."

"We're acknowledging that penetrative sex was once something great that we shared, and we've lost that," she continues. "We need to mourn that it will never be exactly what it once was, and accept what's to come."

The couple is tackling re-learning sex with each other alongside other issues the endometriosis has caused. Virginia says it's impacted both her mental and physical health, and that the doctor's appointments and treatments are financially taxing. "It leaves a question about our future ability to have kids, too," she says. "We have to work on it every day, but I'm hopeful our sex and relationship will only improve. I'm planning to have an excision laparoscopic surgery later this year, and I have to believe it will help. Meanwhile, our faith has been foundational during this time, and we've been in couple's therapy. We try to give each other and ourselves as much grace as possible. I've been working on being honest and vulnerable when I don't feel well. He constantly reminds me that all he cares about is that we're both okay, that he wants to be with me because of me, not because of my ability to procreate... We're constantly reminding each other: We're doing our best — and we still have each other."

On their fifth date, Emily's partner shared that he was navigating severe stomach pain due to irritable bowel syndrome (IBS). "At the time, I didn't understand much about what IBS is or what it would mean for our relationship," she says.

What it meant: He was a loving, thoughtful partner, but when he was in pain, he couldn't always contribute as much to the relationship. "There are times when he is an inconsistent partner, and it's not a moral failing," Emily says. "What he's able to provide in the relationship is based on what's going on with his health and pain levels." There are times he just can't talk when Emily wants to chat, because he's in pain. Or he'll have to sit out several days on a planned vacation because of an IBS attack. "It's understandable, but sometimes it's difficult to separate what's going on with him from the impact it's having on me," she admits. "That's tricky… Over time I've realized, when things like that happen, I can feel my feelings and be disappointed, but at the end of the day, I have to realize that circumstances are always evolving and some things are beyond both of our control."

There's not a lot of guidance on how to support a partner who has chronic pain, Emily notes. You can never truly know what they're going through unless you've felt it yourself, so it's an exercise in "radical empathy." "I try to be a very active listener, and a quick processor of information," she says. "Sometimes, he is starting to feel pain but can't or doesn't want to share it right away." The pain could be due to an IBS attack, or kidney stones (the couple recently learned he has recurring ones). If Emily starts to sense friction, she takes a few different approaches to figure out what's happening. "Sometimes I need to act unassuming about what's happening and then he'll tell me," she says. "Or, if he can't tell me what's wrong in the moment, then I might need to wait until later and provide some mechanisms for him to share information with me when he is able to. I might say something like, ‘Text me from the other room when you catch your breath.’ Or I'll offer to just sit next to him until he can tell me what's going on. When he does start to tell me information, I try to repeat back what I'm hearing to make sure I really understand." This also helps when she's relaying what's happening to close friends or family. "When the other person's pain is invisible, you can't know what's going on with them unless they tell you," she says. "This is why boundaries, patience, and keeping open lines of communication are key."

The couple is also extra communicative during sex. "Physical intimacy is extremely important to us, but there are times he's in too much pain. I don't like to have sex without enthusiastic consent," she says. "I would never want to compel someone to join me in a situation that might cause them pain unless they were eager to do so." At times they can't have sex but are still turned on, they've found other ways to pleasure each other. "Sometimes when it’s too painful or he doesn’t have the energy for sex, we can still collaborate on masturbation," she says. "Sometimes this looks like him laying next to me and being involved in some way, or sometimes it’s just telling each other about a fantasy or an experience we had solo."

After years on this journey together, Emily shares some other things that have kept their relationship strong. "It's surprising, but having pets is a big one," she says. "Sometimes the physical comfort I provide comes with strings attached — I like to talk. A lot. And sometimes he's not in a good space for that. But hugging our animals is so helpful for him." He also identifies as gender-fluid, and finds solace in exploring new ways to express his identity, Emily says. "When he's in too much pain to say how he's feeling, he'll often express himself through fashion or use this exploration as a way to distract himself from his physical body," she says. "I'm glad I can be supportive of him through this.”

The couple's road hasn't been easy, and it's required a lot of communication, but they're learning and growing together every day, Emily says. "When you're in a partnership, you don’t have to be living your best relationship every day — or every week, for that matter," she says. "But you do have to find a way to be connected and to experience shared joy and levity. We've done that."  

Francesca says her chronic pain has been her biggest insecurity in relationships, especially because it wasn't a part of her life until recently. "The chronic pain stems from two related injuries — first, I was brutally raped and then had a suicide attempt," she says. Since, "I’ve found it extremely difficult to allow myself to be intimate with someone and it’s also lessened my sex drive. I find it so hard to get out of my head and constantly find myself comparing every interaction and touch to how it was when I was completely able-bodied and in a better mental space."

“Being attacked really fucked up my head and I've dealt with severe migraines and seizures ever since," Francesca adds. "My attempted overdose left me with searing nerve damage in my right arm." Both injuries made her feel extremely embarrassed, ashamed, burdensome, and self-conscious, she says. Although her "visible" injuries have healed and she's been trying to “fake it 'til you make it" and show the world a mask of positivity, she's still navigating the trauma, all while trying to put herself out there again.

"I’ve recently started dating someone I met on Tinder, but I’ve found myself terrified of self-sabotaging the relationship," she says. "I worry sex won’t be fulfilling, especially to my new partner as sometimes I recoil and wince in pain from a simple touch. I've found myself wondering if they'll think I don't like them — or, worse, that I’m just too damaged."

Francesca is still working through all of this, and says she's trying to shake her comparisons of dating before her assault and after. It's taken a lot of time for her to feel okay letting someone else touch her, but she's getting there, she says. Dating this new partner has helped her figure out what she wants and how to express her needs, and allowed her to feel at peace within a partnership. "They helped re-light something in me I thought I’d lost permanently," she says. "So whether we keep seeing each other or it doesn't work out, I'm thankful for the relationship as it’s helped me feel less lost in the romance department. I’m slowly but surely allowing myself to be vulnerable again."

As far as sex goes, she says allowing herself to feel pleasure is still difficult, but she's "gotten a gentle push in the right direction." "This is something I'll likely struggle with for a long time but I'm trying to accept that," she adds.

Meanwhile, outside of her budding relationship, she's found healing in art. "I've been writing and photographing my way through this," Francesa notes. "I've also been going to physical and occupational therapy to regain use of my arm and hand."

While re-learning to date and trying to heal, Francesca says she's discovered one essential truth: "No matter how much despair you feel, there is hope. Forgive yourself if you find yourself in a place where everything is murky and you don’t know how to cope, and ask for help or support from those who love you. That was the hardest part for me. Finding my voice again allowed me to realize I don’t have to go through this alone — no one does. Today may seem miserable, and it may seem like you'll never find someone — or find peace, for that matter. But fuck it. Allow yourself to want a better tomorrow."