Coming to terms with chronic illness and grief over what’s lost

Tessa Miller was just 23 when her nightmare of deadly infections, procedures and misdiagnoses began.

Over the next several years, Miller tried dozens of medications, was hospitalized more times than she can remember and required three fecal transplants. She visited gastroenterologists, allergists, oncologists, pain medicine specialists, endocrinologists, gynecologists and neurologists.

Her ultimate diagnosis of Crohn’s disease finally explained the “inflammation, ulceration, bleeding, fissures, abscesses, intestinal narrowing and all kinds of gnarly stuff” throughout her digestive tract.

But the diagnosis also meant that she had to come to terms with being chronically ill, caught in what Miller wrote is “that foggy space between the common cold and terminal cancer.” Six in 10 adults in the United States suffer from chronic disease, and due to COVID-19, researchers expect that number to rise.

In “What Doesn’t Kill You: A Life With Chronic Illness — Lessons From a Body in Revolt,” released February 2, Miller shares life lessons she absorbed while learning to grieve the self she’d once been and the future she might have had en route to accepting who she was.

This conversation has been edited and condensed for clarity.

CNN: You paint a vivid picture of the complexities of grief. What have you learned about loss that may be helpful to others?

Tessa Miller: After my dad died in 2008 from liver failure due to long-term alcoholism, I felt what I considered “classic grief.” I was unreachably sad and thought I would spend the rest of my life just spinning on my own little grief planet.

When I was diagnosed with Crohn’s, I was angry — just rage all the time. Feeling like no one else could understand what it was like for me compounded the rage. I squashed and buried my rage, which led to massive anxiety and eventual panic attacks.

Today, whether we’ve lost a loved one or lost our own health to COVID-19, many of us are grieving a world that no longer exists or the loss of our work, our homes or any sense of routine or normalcy. We’re mourning a lot of things at the same time.

It’s time to throw the “stages of grief” out the window. People often expect grief to be a singular emotion when it’s really five, eight or 12 emotions, sometimes all at once. Take time to reflect on all those feelings and understand that you’re in mourning.

CNN: In times of struggle, many of us cling to what you refer to as the “illusion of control.” Why is it important to pierce that illusion with realism — even when the truth hurts?

Miller: When I was first diagnosed with chronic illness, I experienced what Joan Didion calls “magical thinking.” I convinced myself that if I could search back through my whole life history to find what caused this, I could find the cure. But as a science writer, I knew that my disease stems from some combination of genetics and environment. There was nothing I could have done to prevent myself from getting Crohn’s disease. But I still went looking for a cause, which led to a lot of self-blame. This is common among people newly diagnosed with a long-term illness.

Oddly, that self-blame also reflects false hope: If I caused this, then I can fix it. I got stuck in that phase for a long time. It left me both mentally and physically sicker. I wasn’t taking care of my body. Once I accepted that I was going to have this disease for the rest of my life, I started being able to manage it through proper care, like finding a team of doctors who I trusted and pursuing the right treatments. Acceptance was a big step toward my starting to feel physically and mentally better.

CNN: Let’s talk about the link between mental and physical symptoms. What has chronic illness taught you about mind-body interconnections?

Miller: Over and over in conversations I’ve had with fellow chronically ill people, they’ve said they could understand their physical symptoms, but they couldn’t come to terms with why they felt crushingly depressed, anxious all the time, or like they had PTSD.

It’s such a disservice to not talk to chronically ill people about the fact that they need mental health care from the get-go. Both doctors and patients seem to dismiss the fact that your body — the very thing that’s carrying you around in the world — has become unrecognizable, changed, unpredictable.

Then there is the scientific reality that there’s an intimate partnership between your body and your brain. Depression can worsen chronic illness. In addition to causing fatigue, brain fog and body aches and pains, it can make you not want to take your medications.

CNN: How does the US health care system impact the care that people with chronic illnesses receive?

Miller: As I wrote in “What Doesn’t Kill You,” this book isn’t about the health care system, but this book is entirely about the health care system because chronically ill people in America are at its mercy. We know that certain categories of people suffer worse outcomes depending on socioeconomic group, if you’re Black or brown, a woman, fat, trans.

Something like Covid illuminates all the cracks in the system. We have to consider: Who lives in historically redlined neighborhoods, which still today report higher rates of asthma? And who, racially and by gender, makes up the population of essential workers?

Black and brown people are dying from Covid at much higher rates than White people for no reason other than systemic racism, which is deeply entrenched in our medical system.

When it comes to any illness, including chronic illness, consider who can go into a hospital and feel like they’re going to be taken care of, rather than abandoned or treated poorly.

CNN: You have learned a lot about advocating for yourself. What tips can you share?

Miller: Yes, I’ve learned a lot over the past 10 years, but I want to make it clear that it’s easier for me because I have privilege and power. I’m White, thin and my illness is mostly invisible.

Advocating is a skill that can be learned. First, I recommend bringing an advocate — a trusted friend or family member who knows your health history and can communicate for you to the doctors if you’re unable.

Second, always come prepared with a list of notes and questions. For chronically ill people whose flare-ups can be unpredictable, it helps to carry a packet of health records with you. If you wind up at a hospital where you’ve never been before, these can clarify that you’re not just in the ER seeking painkillers.

If a health care provider is being negligent, dismissive or isn’t taking your concerns seriously, then demand that they write everything in your chart, including that they’re not continuing care or not sending you for further testing. If they won’t, send an email to the office to create your own paper trail.

CNN: As the pandemic continues, “long Covid” has become a chronic condition for more and more people. What advice do you have for those struggling with the uncertainty of this new diagnosis?

Miller: Before Crohn’s was identified in the 1930s, people were disbelieved about their symptoms. They suffered and died because their illness was still a mystery. Long Covid is so new and the symptoms are so different from patient to patient. Some people have memory loss and brain fog or mysterious body pains and fatigue while others have long-term heart or lung damage or even psychosis.

The first thing to do is find your community. That will help you find other resources, including doctors who will believe you. As with all health care, this can be more difficult if you’re not in a city. But there is telehealth. Tell your community what you need, and people will help.

I think about this Viktor Frankl quote all the time: “Survival is a community event.” Community support can’t remedy chronic illness, but it can make it easier to carry.