Dealing with the Emotional Burden of Chronic Disease
Dealing with the Emotional Burden
of Chronic Disease
Learning to live with the physical realities of any chronic illness is challenging. In her practice, psychotherapist and author Lori Gottlieb, MFT, tends to the emotional side of it: helping patients advocate for themselves, come to terms with their diagnoses, and manage feelings of isolation when symptoms flare up.
Here, she shares her insight into managing the mental health aspects of a chronic illness, along with an exercise to help anyone take control of their narrative. “People with chronic illness are the most resilient people I have ever met,” Gottlieb says. “They don’t give themselves credit for it at all.”
A Q&A with Lori Gottlieb, MFT
People often come to a therapist saying they are depressed. They have some physical symptoms but don’t even mention that in the beginning because they’ve been talked out of them for so long and nobody else took them seriously. They have diffuse symptoms, like feeling tired all the time or noticing their hair is falling out. People often dismiss these kinds of symptoms in women, labeling the person as being too stressed out, being anxious, or needing more balance in their life.
We know when something is not right with our bodies, and we need to believe ourselves. You feel helpless, discouraged, and despondent and don’t know what to do. Your quality of life has changed because you aren’t able to do the things you used to do.
Most therapists believe people when they say something is wrong with their body. Going to therapy gives you validation and a place to develop the mindset to advocate for yourself. You’re not going to stop until you find a doctor who will listen to you.
The physical symptoms can be helped by having a medical team that works with you, making sure you’re seeing the right specialist, and advocating for yourself. On the emotional health side, it’s important that people are noticing what they’re feeling. It’s okay to feel loss or grief when you get a diagnosis. There’s relief. On the other hand, there’s this sense of realizing that you’re going to be dealing with this on an ongoing basis, which might change certain aspects of your life.
One chronic autoimmune condition with a significant physical and emotional burden is called thyroid eye disease (TED). There are 10 million people in this country who have Graves’ disease. Half of those are at risk of developing TED, which is a separate disease that often goes undiagnosed and requires separate treatment. Symptoms like blurred vision, bulging eyes, and pain are all common and can make it hard to work or change the way you feel about your appearance. I’ve partnered with Horizon Therapeutics to raise awareness of a new campaign called Dear TED, where you can write letters directly to your disease.
Especially with thyroid eye disease, but with any chronic illness, it’s so empowering being able to write to your disease because you get to see on a page that you are not allowing this disease to take over your life. It gives you clarity and lets you take back your narrative. And with the Dear TED campaign, you also get to see other people’s letters. One of the impacts of chronic illness is that it’s very isolating. When you can see other people have experienced similar things and are also taking back their lives, it gives you community and a sense of connection.
How to Write a Letter to Your Illness
Talk about when you first met your illness and how it made you feel.
Share how long it took you to get a diagnosis or the first signs you noticed.
Write about the impact your illness has had on your life—your relationships, work, or social activities.
Tell your illness the actions you are taking to regain your power.
Make a promise to yourself to thrive in spite of your illness.
Share a piece of advice for others living with your chronic illness.
People with chronic illness are the most resilient people I have ever met. They don’t give themselves credit for it at all. The ways they manage their day-to-day life while dealing with this is incredible, but they don’t take that in or validate what they’re doing. They aren’t even proud of themselves for doing that.
When you can take control of your narrative and say, “Look at how strong I am, look at all the things that I’m doing,” and you can put that in the letter—like “I am not letting this disease take over my life”—there’s something very empowering about that. It allows you to take control of your life again.
The first thing is not to be embarrassed about the fact that you have a medical condition. Six in 10 Americans are living with a chronic health condition. That’s more than half of us. When people don’t know what something is, they feel like it will be dismissed, just as it might have been dismissed before they got a diagnosis.
Educate people as you bring it up. For example, “I have this thing called thyroid eye disease. Some of the symptoms are this. Here’s what happens to me. It’s a chronic condition. There are times when I’m fine. There are times when I have flare-ups of these symptoms. I want to let you know and talk with you about what we can do when I do have a flare-up so that we can manage the workload so that everyone’s on board.” People are often very willing to help in those situations.
You can do that with your friends, too. You can send them a link to an article on the internet and be like, “Here’s what I have. I want you to know what this is.”
Often your friends are like, “Why didn’t you show up for me?” Or “Why did you flake at the last minute?” They don’t understand that you physically could not go. Give yourself permission to let things go and be realistic about what you can and can’t do on any given day. Know that the people who care about you will not be disappointed in you, because they want you to take care of yourself.
Being able to talk to the people around you and finding a support group is important. Connecting with other people who understand what you’re going through is incredibly healing and validating, and it means you are not alone. Someone who’s experienced that same symptom knows exactly what you’re talking about. That’s the beauty of the internet. You can live in any city and find either in-person or online support groups. There are also support groups for people who are caregivers and supporting their loved ones with the chronic illness.
Lori Gottlieb, MFT, is a psychotherapist and the New York Times–bestselling author of Maybe You Should Talk to Someone, which has sold more than a million copies and is currently being adapted as a television series. In addition to her clinical practice, she is a cohost of the popular Dear Therapists podcast, produced by Katie Couric, and writes the Atlantic’s weekly Dear Therapist advice column.
This article is for informational purposes only, even if and regardless of whether it features the advice of physicians and medical practitioners. This article is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice. The views expressed in this article are the views of the expert and do not necessarily represent the views of goop.
We hope you enjoy the books recommended here. Our goal is to suggest only things we love and think you might, as well. We also like transparency, so, full disclosure: We may collect a share of sales or other compensation if you purchase through the external links on this page.