The simultaneously challenging but ‘joyful’ realities of being a parent with a chronic illness

There are no days off when it comes to being a parent. It doesn’t matter if you have a huge deadline looming at work or were up all night because someone had a stomach bug—there are still lunches to pack, homework to check, and bedtime stories to read. Even if you have a chronic illness that leaves your body aching and it difficult to even get out of bed.

Chronic illnesses—defined as a disease that lasts longer than a year—vary significantly in terms of symptoms and severity. The umbrella term includes mental health conditions like clinical depression as well as physical ailments like Type 1 diabetes and fibromyalgia. Even people with the same chronic illness may experience it differently. Here, two women living with chronic illness—both past guests of Made Visible, a podcast about living with chronic illness—share what working, parenting, and managing their symptoms looks like for them.

“Yes, they’re exhausting, but they’re so joyful”

Rachel Trobman had been living with non-specific connective tissue disease (an autoimmune disease with symptoms including arthritis, joint pain, mouth ulcers, and photosensitivity) since high school—more than a decade before becoming a parent was even a thought in her mind. “I have a lot of various antibodies that appear in my blood and work against various parts of my body, but none have risen to a particular level to impact how my organs function,” Trobman says. “It means that when I do get sick, it can trigger a flareup in my whole immune system. Like, if I get the flu, I could also get reactive asthma. Or if I get a cold, my joints may start to ache.” She takes prescription medication to help manage the worst of her symptoms.

Because Trobman’s immune system has to work harder than the average person’s, she’s often fatigued a lot. But she didn’t let it impact her career goals— she worked as a news producer for a decade before launching her own digital health company, Upside Health. It also didn’t stop her from starting a family with her husband, when she was 29. “With every life change—starting college, getting my first job, becoming a parent—it gave me a lot of anxiety as to if I could really manage it on top of my chronic illness,” Trobman says. “I had a lot of questions when I was pregnant, like how I was going to manage not sleeping after the baby was born or if my kid was going to get sick all the time, which would in turn mean I would get sick all the time. I had a lot of concerns.”

“I know I need to do what I can to protect my health because otherwise, I won’t be able to parent at all.” Rachel Trobman, Upside Health CEO and co-founder

After her daughter was born, Trobman took it all as it came, including the fatigue and frequent sicknesses. “Because I get sick more easily, I probably did have it a little harder than most parents, but fortunately, I don’t parent alone and my husband has been—and still is—an amazing partner,” she says. “[As a parent with a chronic illness], I’ve learned to anticipate what my body needs,” Trobman says. “If I’m going to be traveling for work, I know I’ll most likely get sick for a few days after, so I have to plan for that, including who will care for my daughter during that time. I know I need to do what I can to protect my health because otherwise, I won’t be able to parent at all.” Trobman says she also prioritizes stress management, as stress can overtire the immune system. For this, she schedules therapeutic massages.

Anticipating her needs made Trobman feel a bit less anxious when she became pregnant a second time, three years ago, with another baby girl. But Trobman says that each time she was pregnant, she worried her daughters would inherit her weak immune system. “Now I look at my girls, one of whom does have an immune system similar to mine,” she says. “I feel guilt and helplessness because there’s nothing I can do.”

Ruschelle Khanna, LCSW, says guilt is a common feeling parents with chronic illnesses encounter. “There are two types of guilt: rational guilt, when something is your fault, and irrational guilt, when you feel guilty for something that’s not your fault,” she says. “Having a chronic illness is not anyone’s fault. Don’t blame yourself for things you don’t have control over,” she says. Whether it’s for having to take time for self-care or for the mere existence of having a chronic illness, Khanna emphasizes that there is no place for guilt. “In fact, you are modeling to your children the importance of taking care of yourself, which is a positive,” she says.

On a practical level, Trobman says having a chronic illness has made her more in-tune not only with her body, but with her daughters as well. She can spot the first signs of sickness better than most and spur into action. She says motherhood has even helped with managing her chronic illness. “Yes, they’re exhausting, but they’re so joyful,” she says. “They make me happy to be around [them]. It’s incredibly therapeutic. It’s such a blessing. We go on all these adventures that are good for the mind and body.”

“What Lyme taught me was to create more balance for myself”

Interior designer and TV personality and producer Genevieve Gorder was diagnosed with Lyme disease nine years ago, after a year-and-a-half of doctors scratching their heads. “I became very fatigued, that was the first noticeable symptom,” she says. “It was the type of fatigue you feel when you’re pregnant, and I felt it constantly.” In addition to fatigue, the right side of her mouth also started burning, and she had problems with her ears and eyes.

Gorder’s doctor tested her for a range of diseases—including Lyme, which came back negative. “Experts call Lyme the great masquerader because it likes to hide in the body,” she says. “It’s like a flower that closes up for periods of time and when it blooms, you feel the symptoms. But it’s only when it’s in full bloom when you test positive.” While Lyme disease is treatable with antibiotics, up to 20 percent of patients experience chronic symptoms long after their initial treatment—something known as post-treatment Lyme disease syndrome.

During the year-and-a-half she was searching for a diagnosis, Gorder was working on three TV shows, napping whenever she could, even if just for a few minutes. She was also going through a divorce and caring for her two-year-old daughter. “What Lyme taught me—and I’m convinced this is one of the reasons I was given Lyme—is to create more balance for myself,” Gorder says. She says before her diagnosis, she had been the type of person to push hard and prioritize resting last. “I learned to slow down and not feel guilty for doing so,” Gorder says. This meant slowing down and if she needed a nap, she’d take it and not feel bad about it. She stopped raising her hand to host events and spearhead every volunteer project. She says working out also helped with her symptoms, so she consistently made time for it, no matter what else was on her plate.

“Raising a child as a single mother and with an autoimmune disease, you can’t do it alone.” —Genevieve Gorder, interior designer

When it came to parenting, creating balance required asking for help, something Gorder says she was not in the practice of doing. “Fortunately, there are a lot of great moms in my neighborhood, and I leaned on them a lot,” she says. “Raising a child as a single mother and with an autoimmune disease, you can’t do it alone.” Asking for help is a big lesson Khanna says all parents with a chronic illness must learn, and something else they shouldn’t feel guilty for doing. “If you aren’t in the habit of asking for help but need to, I would first make a list of all the ways you need help,” Khanna says. Then, write down what’s in the way of you getting that help. Most women have many more resources available to them than they realize, ” including people in their lives who are willing and actually want to help,” she says. She also says it’s important for parents to connect with other parents living with chronic illness, whether it’s through local meet-up groups or online, such as Healing Well and But You Don’t Look Sick.

Multiple rounds of strong antibiotics helped mitigate Gorder’s symptoms of Lyme and she started to feel better. Then, eight years later, she was diagnosed with Hashimoto’s disease (an autoimmune disease that attacks the thyroid). “This time around, I knew how to take care of myself while also working and parenting,” Gorder says. Once again she was reminded the importance of balance, prioritizing rest and also play. She says sticking with a whole foods diet and taking vitamins helped lessen her symptoms but knows they can come back at any time. She also remarried last year, making parenting duties a bit easier.

“I love being a caretaker and I also love working, but before my diagnosis, I was pushing hard at everything and putting myself last,” Gorder says. “I had to create that balance so I had room to figure out how to best care for my body.”

Every parent’s experience is unique, just like every person’s experience with chronic illness is unique. But there’s one thread that’s true for everyone: “As a society, we have high expectations of moms,” Khanna says. “The key is to show them some compassion.”

BTW, the average mom works 98 hours a week, so all parents could use a little help. And another area that can be tricky to navigate while managing a chronic illness: dating.