Bestselling author and therapist Lori Gottlieb shares her caregiving tips.
Chances are you know someone with a chronic illness. The Centers for Disease Control reports that nearly 60 percent of adult Americans are living with at least one chronic illness, which can take on many forms, including arthritis, heart disease, and mental health disorders. And unlike acute illnesses, these types of conditions won’t ever go away. They’re persistent. According to the CDC, a condition is chronic if it lasts at least one year, and requires ongoing medical attention or limits activities of daily living or both. If that weren’t enough to bum you out, chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the United States.
It goes without saying that watching a friend or loved one struggle with a long-term or lifelong illness can be incredibly difficult. While all of us have fallen ill at some point in our lives, being plagued by something long-lasting is a completely different ballpark, and if you don’t know what that feels like, it can be hard to fathom exactly how to comfort and support someone with this type of diagnosis. And don’t forget, people with chronic illnesses may look fine on the outside, but just because you can’t see their side effects or struggles doesn’t mean they don’t exist.
We talked with New York Times bestselling writer and therapist Lori Gottlieb, MFT, about some ways you can support someone loved one with a lifelong illness. After all, Gottlieb knows the subject well — she’s now part of the new campaign, “The Air Between Us All” about how chronic conditions like asthma impact relationships and has a lot to say about what can be a thorny issue.
Be open, not afraid
So how do you support someone living with a long-term illness if you have no idea what it’s like? Gottlieb says creating an open dialogue is a good place to start, even if it might be a little uncomfortable at first.
“Some people worry that if they bring up someone’s chronic illness, they’re going to say something wrong,” Gottlieb, who’s the author of Maybe You Should Talk To Someone, told Katie Couric Media. “But, in reality, the person is usually thrilled that someone is addressing it instead of pretending it doesn’t exist.”
You also shouldn’t feel like you have to walk on eggshells around someone with a chronic condition. If a person feels like you’re bringing it up too much, they’ll tell you, says Gottlieb. “The bigger problem is people are not talking about it at all, and people already feel invisible when they have chronic conditions,” she tells us. “They feel even more alone and invisible when people are not talking about it or not acknowledging it, and then they feel like they have to hide it even more.”
At the same time, it’s a two-way street: A caregiver or family member should feel like they’re being heard and their needs are being taken into consideration, too.
“A lot of times I see caregivers feel guilty that they can or want to do something that might be problematic for the other person,” says Gottlieb. But she urges caregivers and loved ones not to sacrifice their own interests, needs, and ambitions to avoid resentment. “It’s really important, whether it’s in a family or in a romantic relationship, to say, ‘Hey, here are the things we can do together, and then also this activity is really important to me and I can do that on my own.'”
Ask questions and be curious
You’ve probably heard that communication is the cornerstone of virtually any healthy relationship, whether romantic or platonic. But it’s especially important when it comes to offering support to those with chronic illnesses: Many people and their caregivers face the constant stress of treatments, lifestyle adjustments, and dealing with insurance or their healthcare providers. These factors can make conversations tricky, but it’s important that you provide a space where they feel like they can talk about their needs.
“A support system is so important with somebody living with a chronic condition,” Gottlieb tells us. “And this is where communication comes in — you can’t help someone if you don’t know what they need.”
This may seem like a no-brainer but it’s an important step that can be overlooked by loved ones — and people with chronic illnesses often don’t know how to bring up their condition themselves.
The struggle to have these conversations is something Gottlieb has seen-first hand among some of her own patients. For instance, one woman told her that she was so scared to tell her new boyfriend she had asthma that she waited until she had an attack right in front of him. Thankfully, he was completely understanding and it opened up a much-needed conversation between them.
Obviously, people shouldn’t wait until there’s an emergency to tell their loved ones or partners about their condition because it could lead to a dangerous or even life-threatening situation. “The more that these conversations are had, the more chronic conditions will be normalized, and that can help improve relationships for all of these people overall,” she tells us. Plus, it’s important that people are prepared for a worst-case scenario, and if you don’t know what someone’s dealing with, you can’t be.
But even once you know what someone is up against, instead of automatically assuming you know what they need in terms of day-to-day or emergency support, she said it’s better to ask directly what you can do for them. After all, there are so many different variations of diseases, and everyone has a unique experience, so chances are what they need may not be what you read online. Some of these questions could include, “What would be helpful for me to know and learn about your illness?” “What’s it like living with your illness?” and “How can I best support you?”
Show compassion
Researchers have traditionally defined compassion as a desire to help when you see another person suffering. This term shouldn’t be confused with pity, though. As Gottlieb points out, people with chronic illnesses don’t want you to feel sorry for them or be made to feel different, they want to be understood.
“Everyone is going through something. If you care for or know someone with a chronic condition, be compassionate and remain open to playing a supportive role,” she says. “As someone who is connected to a person living with a chronic condition, you play a critical role not just in their health but also their overall well-being.”
So what does this look like in practice? Compassion could mean helping someone accomplish a task, like cooking dinner with them or offering to get their groceries, that might be challenging or painful for them. It could also be something as simple as considering their needs or restrictions if you’re planning to spend time with them. For instance, she points out that strong perfumes are a common trigger for asthma attacks, so maybe they’re best avoided when you’re around someone with that condition. Know and consider their specific limitations and struggles so that you don’t accidentally exacerbate them. In other words, real compassion means letting your actions speak louder than words.
“It’s not about constricting your life,” she says. “It’s about these minor accommodations that are really easy to make.”
