In an exclusive interview, Lori Gottlieb, a licensed marriage and family therapist and psychotherapist based in Los Angeles, talked with Everyday Health’s senior producer and strategist, Jamie Putman, about how to manage your mental health when you have a chronic condition.
Gottlieb, who writes the Atlantic‘s weekly “Dear Therapist” advice column, has authored several books, including the New York Times bestseller Maybe You Should Talk to Someone.
Gottlieb shares both personal and professional insight into why living with chronic health issues from the point of diagnosis (or the long road to it) to physical pain to managing them day in, day out can complicate mental health. She also speaks to what you can do to feel more empowered.
The following are some highlights from an edited transcript of the interview.
Jamie Putman: Visible and stigmatized illnesses such as psoriasis, thyroid eye disease, atopic dermatitis, and conditions that limit mobility have their own unique challenges. How do these illnesses affect mental health?
Lori Gottlieb: I want to raise awareness about people who are living with chronic illness. I don’t think people realize this, but 6 out of 10 Americans are living with a chronic disease. If you aren’t experiencing that yourself, you probably have a loved one or friend who is.
It’s not like you get sick and then you’re better. It’s something that waxes and wanes. Sometimes you feel good, sometimes you feel really bad. And a lot of people don’t understand that, so I think it’s important that we raise awareness about what chronic illnesses look like.
And I think one of the most important things that people can do is to believe themselves when they feel like something isn’t right with their body. Often, what happens with all kinds of chronic illnesses is that something feels not quite right, so the person goes to the doctor. They get dismissed, and then they think, “Oh, it must be all in my head.” But it’s not.
JP: You have a chapter in your book titled, “My Wandering Uterus.” Can you briefly explain the history behind the wandering uterus and its evolution over time?
LG: I have my own personal experience with chronic illness. I was having all kinds of vague symptoms. I was fatigued, my hair started falling out, I was having vision issues, I couldn’t concentrate, I couldn’t focus — there were so many different things going on.
Doctors would say, “Oh it’s just anxiety” or “Don’t worry, you need to do self-care.”
I was doing self-care, and it wasn’t improving anything. Historically, people would say that the reason women are experiencing these symptoms is because they have a wandering uterus. And so the chapter title was my way of saying that things haven’ t really changed much. They just don’t call it a wandering uterus now, they say you’re too stressed.
JP: There’s a term that I’ve heard called medical gaslighting, which might kind of reflect that or mirror it. Why is it so much more prevalent in women, especially women of color?
LG: I think doctors have the best intentions and they’re not being malicious, there’s just a blind spot when it comes to chronic illness. And I think that the blind spot is bigger with women and especially people of color — doctors just aren’t paying attention in the same way. They think, “Oh you’re tired, that’s not a medical emergency.” But actually it’s related to all these other things going on.
We know our bodies best. Doctors don’t know you, they don’t know what your baseline is. It’s important that you’re clear. Say, “Listen, this is very different for me. My life is very different now than it was months ago, and I really need you to take this seriously. We need to get to the bottom of this.”
You have to really advocate for yourself. Part of that is educating the people around you — not just your medical team, but also your friends and family because they too might not take your condition seriously. If you don’t, you can get to a point where you feel so isolated. You feel like, “Well, I’ve talked to all these people about it but nobody’s taking me seriously, so maybe it is just anxiety.”
JP: What are some of the consequences of medical gaslighting or being misdiagnosed?
LG: The first consequence is that you’re not getting treatment. Your symptoms are going to get worse, which really interferes with your functioning. Symptoms can make it hard for people to work or socialize. That interferes with your quality of life, your relationships, everything.
The other part is the mental health piece. If you don’t get diagnosed and treated, you start to become depressed and anxious. You start to feel defeated and helpless. You’re also feeling like, “Maybe I’m crazy, because everyone is telling me that I’m crazy and that I don’t have a medical condition.”
That’s where the gaslighting comes in.
JP: You answered some of this already, but I want to ask about the impact that some of these stigmatized illnesses can have on confidence, social support, productivity at work, and relationships.
LG: Often, it takes months to years for people to get a diagnosis. That can take such a toll on your mental health.
With many chronic illnesses, all of a sudden you can’t do things that you could normally do. You might have to tell your boss or your colleagues that you weren’t able to do something, so people think you’re being lazy, when really you physically can’t get it done. You say no to social things and people think you’re not being a good friend, because they don’t understand why you’re not showing up. It affects every single part of your life.
JP: What actually helps people move forward and feel comfortable in their own skin?
LG: When you finally get a diagnosis, two things happen. One is relief, that you know what’s going on and it’s being taken seriously. Once you have a support team and a plan, you can start doing what you need to do to feel better.
But there’s also some grief and loss in realizing, “This is my new normal, some days are going to be hard for me, and that’s just how it’s going to be.”
So many people in our culture of optimism and happiness want to say, “Oh everything is great now.” But no, you’re going to have some hard days. If you can allow yourself to feel whatever you’re going to feel around that, you’ll also be able to see that you’re very resilient.