It was the stairs that convinced Miguel Porter that something was really wrong. In early 2018, he was visiting his then-fiancée Genail “Genny” McKinley in India, where she was working. Porter knew she’d been feeling unwell lately, but when she could barely make it up a few steps at the hotel without help, he really began to worry.
“It was quite shocking really because she didn’t look anything like she normally did. Genail has always been very active, so to see her so frail and struggling to walk up three or four steps – it was heartbreaking,” Porter says.
Shortly after that fateful trip, McKinley was hospitalized for over a month with inflammation in her kidneys so severe doctors thought she’d be on lifelong dialysis. The cause: systemic lupus erythematosus (SLE). Known as lupus for short, SLE is an autoimmune disease in which the immune system attacks the body’s tissues. It’s a chronic illness that can cause widespread inflammation and affect the kidneys, brain, joints, skin, lungs, and blood vessels.
Today, McKinley is managing her lupus, and she’s not on dialysis. But her life with Porter has changed.
One thing that often gets overlooked is how much lupus can affect a couple. “Lupus is a complicated chronic illness,” says Lesley Koeppel, LCSW, a New York City-based psychotherapist who works with patients managing chronic illnesses. “It’s an emotional roller coaster for the patient. They’re the one who is living with it. It’s not a contest, but it’s almost harder to be the caregiver.”
Here, two couples and Koeppel reflect on lupus’s impact on relationships and the best ways to cope.
New Ways of Spending Time Together
Donna Sweed has been married to her husband, Bill, for 46 years, but only living with lupus for the past 4. The disease brought some marked changes in their relationship, the biggest of which has been how they spend time together.
“Bill’s a walker – he likes to get out and walk,” Sweed says. “I can’t go with him.”
For Sweed, the inflammation from her lupus manifests most noticeably in her legs: “The heaviness in them, the achiness in them,” as she puts it. “It’s just that my legs tire so easily. I have to rest. It’s affected everything that I used to do.” That includes vacations with friends where there might be strenuous activities like a hike, or simply times when she needs to stay in her hotel room.
There are good days and bad days, and thankfully, Bill is understanding. They’ve found ways to work around her flares (those periods when symptoms seem to return or worsen) by doing things like traveling on cruise ships, where they can see a lot without too much exertion. It also gives them some flexibility. “We still take vacations,” Bill says. “Maybe I do some activities on my own, but we’re still able to function as husband and wife.”
Porter and McKinley have had to make major social changes. “There was this transition period at first where I could manage my lupus and do the same things – eat whatever and drink whatever,” McKinley says. “But now I’m in the position where I have to set stronger boundaries.”
It helps that Porter and McKinley have made lifestyle changes together. Both began vegan diets in an effort to tamp down on McKinley’s inflammation, and she now teaches others about plant-based eating as a certified holistic nutritionist. (There is some evidence that plant-based diets can help improve symptoms of lupus.)
Adopting a new diet can make something as simple as picking a restaurant a potential minefield. “Our social circle has definitely changed,” McKinley says. “I have to be more mindful about who I spend my time with because it’s difficult for people to understand when you look fine on the outside.”
Making Time for Intimacy
Given the random timing of flares, the life of any lupus patient is full of ups and downs.
“Lupus is particularly complicated because of the unpredictability of it,” Koeppel says. “You might be having a great day or a great week, and out of nowhere you can have a flare-up that erases all of it.”
That unpredictability can affect many parts of life, but one that stands out is how it affects intimacy.
“Intimacy before lupus was easy,” Porter says. “But now, obviously, when Genail is feeling fatigue or chest pain, that changes how you feel.”
Symptoms of lupus (such as joint pain) and certain lupus medications (which may have side effects like vaginal dryness or low libido) can also affect sexual health by making sex painful. The key is working around these flares with understanding. “As a partner, you just have to recognize a flare is not a good time to be thinking about that,” Porter says.
Koeppel says that it’s essential to find other ways to demonstrate love and affection. “When you’re having a flare-up, it hurts to even be touched sometimes. So, maybe just in those moments, it’s about saying I just love knowing you’re next to me,” Koeppel says. “There are so many forms of intimacy; it doesn’t have to be sexual.”
Managing Feelings of Loss
The Sweeds are both retired now, but that wasn’t the original plan. “It was a job where I was on my feet a lot, and I just couldn’t do it anymore,” Donna says.
The decision to retire early was huge. While it was the best one available given the situation, it can be frustrating and even depressing when a chronic illness makes decisions for you. “A lot of people think that mourning only happens when someone passes away,” Koeppel says. “I beg to differ. We all mourn every day, about yesterday being gone, our kids growing older. For someone with lupus, they’re often mourning what they’ve lost.”
When someone is feeling down, it’s often the partner’s job to lift them up. “Thankfully Bill has been an immense support through it all,” Donna says.
Likewise, Porter and McKinley are plotting out their future. Up next for them: starting a family within a few years. “With lupus, the doctors prescribe you medicines that make you infertile,” McKinley says. Careful planning with her doctor and changing medications to allow for pregnancy will be in order.
Despite the challenges, going through it together has made it easier. “We have to manage it,” McKinley says. “But I’m looking forward to the journey. Overall, we’re optimistic.”