Couples Living With Chronic Illness Share How Their Relationships Work Under Challenging Conditions

"You're gonna be giving up a lot ... They have to be your best friend first."

Nearly half of all Americans live with at least one chronic illness. As the condition progresses over time, and in some cases, compounds with additional diagnoses, everyday living becomes increasingly challenging — not just for the person living with chronic illness, but for their romantic partner as well. The daily physical pain of a chronic illness dictates what both partners can do and often restricts them to their homes, forcing them to miss family events, social gatherings, and even something as simple and practical as grocery shopping together.  

Beyond the everyday complications, however, engaging in a romantic relationship presents a whole other set of unique challenges. For couples to survive a chronic illness, and maintain a sense of romance, they have to find a new "normal." It's often not what they want it to be, but in the end, it's worth it to show their love for each other however they can. 

We spoke to four spouses of people living with a chronic illness to learn how they overcome romantic obstacles to show love for themselves and for their partner.

 Rawpixel.com I Shutterstock
 Rawpixel.com I Shutterstock

For the sake of privacy, some participants have asked to use pseudonyms or not to reveal their last names.

We first spoke to a woman named Sara H*, who had to get a third job after her husband's chronic Lyme disease diagnosis forced him to leave work as a full-time housepainter. "Just prior to his illness, I had to quit teaching full-time in order to take a new direction in my career and go back to graduate school," she told A Plus. "... I had to get a third job in order to make ends meet, but one that was flexible enough in case I had to take him to the ER or doctors." 

While Sara took on more responsibility in every aspect of their lives, her husband became depressed and almost suicidal because he couldn't help with even the most basic tasks. "We would both become withdrawn, sad, spiteful," she explained. "... We also would go months without being intimate because he would be exhausted for days and days afterward." At his lowest point, when he thought he was going to die, Sara's husband asked her to start looking for a new spouse, so he could approve of him and make sure he would love and care for her and their son the way he would. 

Because intimacy is difficult, if not nearly impossible, for couples living with chronic illness, many partners feel more like a caregiver and less like a spouse. To cope with her sexual frustrations, Sara H. came up with a different solution entirely. She joined several online support groups so she could vent her frustrations to those who understood her. "In a strange turn of events, I found myself in a secret BDSM [bondage, discipline, dominance and submission, sadomasochism] group on Facebook. Never thought I would have found myself there, but I did," she said. "... It helped me take out my sexual frustrations in a safe way — one that would not lead to cheating."  

After reading an article posted in the group "about what BDSM really is and what it's not," Sara H. discovered a renewed sense of purpose toward helping her husband. It came just at the right time — when she wanted to walk away.  "My husband noticed a difference in my attitude and asked what had happened," she recalled. "I told him about the articles I found and the group I was in, and he was very supportive." He wasn't even surprised that she'd found inspiration in such a group. If it worked for her, it worked for him.

The Facebook group allowed her to explore her sexual fantasies as a form of self-care without hurting her husband. Through the experience, she realized how important it was to take care of herself first so she would be able to care for her spouse. "Whatever gives you a healthy outlet to continue, do it," she explained. "Don't be ashamed to ask for help. Don't be ashamed to vent. Don't be ashamed to find sexual stimulation in other ways, as long as it's safe and consensual and isn't going to hurt someone if [they] found out."  

With a renewed sense of connection to her husband, Sara H. also began to do accupressure on him, which helped bring back the skin contact she craved. They also replaced their weekly date nights with a weekly night in, watching a show and eating on the bed together, as many couples with chronic illness do. 

“We made time to express how we feel to each other instead of letting it build up. We will cuddle and snuggle as much as possible, without actually having sex.”

 ABO PHOTOGRAPHY I Shutterstock
 ABO PHOTOGRAPHY I Shutterstock

Colleen has been married to her wife for three years, but has been her caretaker for nearly five. After meeting on OKCupid, an online dating site, Colleen's wife shared that she had post-concussion syndrome from a previous head injury. "About six months into the relationship, she became very ill with unexplained symptoms, including fatigue, pain, and severe Multiple Chemical Sensitivity," Colleen told A Plus. "After about a year of searching for answers, she finally got a diagnosis of chronic Lyme disease. She now has the additional diagnoses of chronic fatigue and fibromyalgia."  

Living with several chronic illnesses has had a tremendous impact on both their lives. Because Colleen's wife has had periods of time when she was unable to work, the couple went into severe debt trying to find effective treatments, and they have had to move many times, due to housing instability. "It has definitely put a lot of stress and strain on our relationship," Colleen said. "I feel like we have had to deal with so much more in our five short years together than many many other couples have had to deal with." 

What keeps Colleen and her spouse united as they face these challenges is their shared sense of priorities. "We decided early on that whatever access to money we had, we needed to do whatever we could to figure out how to help her," she explained. "Even though this has put us in a lot of debt and means we now have no savings, we consciously decided to choose her well-being over financial stability." 

Like Sara and her husband, the couple has found small, simple ways to enjoy each other, even on the worst days when it takes all their energy just trying to survive. 

“We try to make sure to do nice things together, take breaks from the constant stress, laugh a lot, cuddle a lot so that even though sex is hard, we don't lose that intimacy,” she said. “Therapy is also good. Community is good. I wish I had more of a community. I have a very supportive family, so that helps.”

 Photographee.eu I Shutterstock
 Photographee.eu I Shutterstock

Because chronic illness can make it too painful to leave the house, life can be isolating, even with a romantic partner. "Some days I feel that we are just roommates trying to make ends meet," Emily Clark, whose husband Joe lives with ulcerative colitis, interstitial cystitis, and prostatitis, told A Plus. 

Though they were a self-described "fairly normal couple when Joe was only diagnosed with ulcerative colitis, their relationship has become more difficult over the past five years as his illnesses have progressed. "These two diseases have turned him into a different person. It hurts to walk; it hurts to move; it hurts to take care of our baby," Emily said. "While the symptoms of these diseases are bad enough, he has also been plagued with extreme fatigue, anxiety, depression, and a super low sex drive … In the past year, we have only had sex twice (granted, we have a 9-month-old, too)." 

Even so, the couple still manages to have stretches of good days when they laugh and enjoy each other's company, just like when they were dating. Then there are the other days when the Clarks feel "overwhelmed and depressed" trying to balance treating Joe's illness with raising a new baby. "We have a hard time keeping up financially because of his high medical bills. We see our friends and family getting to enjoy vacations, date nights, new clothes, etc. and we both get hurt that we are in our 30s and can't enjoy life like our peers," Emily explained. "It feels like we got the short straw in life, and it's hard for others without chronic illnesses to fully understand." 

Within the last month, Clark has begun to find a community that understands what she's going through in a private spouses of chronic illness Facebook group. "Just hearing other people's stories and knowing that you are not alone in this struggle gives you strength," she noted. Those interactions make her feel less alienated from the rest of the world, though the Clarks have both had to "come to terms"  with not being able to have normal lives like their peers. 

“We stay in, and just try to exist as best we can. On the days he is feeling OK, we usually try to get out of the house, go out to eat, and try to feel like we are in our 30s.”

Emily and Joe Clark 
Emily and Joe Clark  Photo courtesy of Emily Clark 

Every couple makes sacrifices for each other, but those living with chronic illness make sacrifices as often as they make dinner. Janet Amparano, whose wife has fibromyalgia and other chronic illnesses, moved 145 miles away from her job so her wife could stay near her doctors and family. Every day, she leaves at 2:30 a.m. to make the two-hour commute to work before a 12-hour shift. 

"One of our biggest obstacles is that we can't go out that much. So we're home a lot, probably 95 percent of the time. [We] miss a lot of family functions," she told A Plus. "... I'm usually burnt out from work and don't want to do the trip, or if she's having a bad flare up, I don't want to leave because something could happen … I mean, she's always encouraging me to go do something, but I don't." 

During the second year of their relationship, the obstacles became more difficult to overcome. "We started arguing more. [There was] a lot of frustration on her part because she ended up losing her job because of her illness," she recalled."So … we took about a four-month break, and then we wanted to try it again." After the couple reunited, they got a new place together and got married a year later. 

The time apart showed Amparo that, despite the complications of chronic illness, their love was worth it. "My biggest thing is that we became best friends first. So that [sex] comes second," she said. "My relationship is based off that, like a lot of people. There isn't a whole lot of affection, but that's not her personality to start with." 

Because Amparo and her wife are older, they don't mind the lack of sex or social interaction as much as a younger couple might. "They're seeing people in their own age group going out, doing this, doing that, having fun," she said. "[Whereas] in our age group, we've been there, done that. So sitting at home is not a big deal. We've already done all that partying and hanging out with people." 

In the past year, the couple has been able to go out to dinner once, maybe twice. Still, when they are able to get out of the house, they make the most of their time with a day trip to the beach. Because long car trips are hard on Amparo's spouse, they usually spend the night there, which offers them a little getaway. 

Mental health counseling has also helped the couple come to terms with their quality of life. "My wife has severe depression [when] she's in the room for days on end because she misses things, and she can't function like an everyday person," she said. "... So she uses her psychiatrist to vent, which I think is good. I think you gotta talk about it more, and you gotta learn to give that person their space." 

She has learned not to "be overly caring" toward her spouse because they feel like they're being babied, which can exacerbate their feelings of inadequacy. "In our house, if I see she's having a bad day, I don't bug her. I don't say, 'Oh, are you OK?' or 'What can I do?' I'm not overbearing with that," she added. "That took a lot of learning because I'm a caregiver by nature, so I'm always going above and beyond." 

Why? Because that's not just her wife, that's her best friend. "You can't get caught up in the moment like you're in love with this person ... there's gonna come a time — if it's a serious illness — that you could be shut in for almost a year because they can't walk; they can't breathe ... and it's hard for them. And you gotta do as much as you can for them not to feel guilty for having that disease," she explained.

“... You're gonna be giving up a lot. You really are. You gotta make sure that that's your best friend first. They have to be your best friend first.”

Janet Amparano and her wife 
Janet Amparano and her wife  Photo courtesy of Janet Amparano

Life, and love, with chronic illness may be difficult, but these couples prove it's not impossible. Despite the physical limitations and emotional toll, they take care of each other however they can. "Each couple has [their] own way to express love and care. With good communication and purposeful intention, illness does not have to derail intimacy between partners," Joanna Charnas, LCSW and author of 100 Tips and Tools for Managing Chronic Illness, told A Plus. "We can continue to maintain intimacy, even when faced with the challenges of chronic illness." 

Having lived with Chronic Fatigue Immune Dysfunction (CFIDS) since her teens, she knows firsthand how to overcome the various obstacles associated with chronic illness. She has made it her life's work to help couples in similar situations work together to achieve a fulfilling sex and romantic life. "People living with chronic illness can continue to be sexually active, but sometimes the frequency of sex declines, or the range of sexual expression may be limited by a body that doesn't work the way it used to," she noted. "When this happens, couples can explore other ways to feel close and loved." She recommends "simple skin to skin contact," such as getting naked and snuggling together, to produce feelings of closeness and maintain intimacy. 

She also suggests couples perform "acts of kindness" for one another, as they have the ability to elicit loving feelings as well. "Performing a taxing chore for your partner when you both feel ill is a clear demonstration of caring," she said. "...When we are sick, every day activities can take longer and are more challenging to complete. Making time to be together, free of electronics, is an act of caring that produces intimate feelings." 

Couples living with chronic illness have to work incredibly hard to achieve the everyday parts of a "normal" relationship other couples take for granted. It's not fair, but it's the life they've chosen to be able to share it with the one person who matters most. 

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