In the years that followed, Miller tried dozens of medications, was hospitalized more times than he can remember, and needed three fecal transplants. She visited gastroenterologists, allergists, oncologists, analgesic specialists, endocrinologists, gynecologists and neurologists.
His final diagnosis of Crohn’s disease finally explained “inflammation, ulceration, bleeding, fissures, abscesses, intestinal narrowing and all kinds of nodules” throughout the digestive tract.
This conversation has been edited and condensed for clarity.
CNN: You paint a vivid picture of the complexities of mourning. What have you learned about loss that can be useful to others?
Tessa Miller: After my father died in 2008 of liver failure due to long-standing alcoholism, I felt what I consider “classic grief”. I was unapproachable sad and thought that I would spend the rest of my life just spinning on my own planet of sadness.
When I was diagnosed with Crohn, I was angry – just angry all the time. Feeling that no one else could understand what it was like for me increased the anger. I crushed and buried my anger, which led to enormous anxiety and possible panic attacks.
Today, whether we have lost a loved one or lost our own health to Covid-19, many of us are suffering for a world that no longer exists or for the loss of our job, our homes or any sense of routine or normalcy. We are mourning many things at the same time.
It’s time to throw the “mourning stages” out the window. People usually expect mourning to be a unique emotion when there are actually five, eight or 12 emotions, sometimes all at once. Take time to reflect on all these feelings and understand that you are grieving.
CNN: In times of struggle, many of us cling to what you call an “illusion of control”. Why is it important to pierce this illusion with realism – even when the truth hurts?
Miller: When I was first diagnosed with a chronic illness, I experienced what Joan Didion calls “magical thinking”. I convinced myself that if I could research my entire life story to find out what caused it, I could find a cure. But, as a science writer, I knew that my illness originated from some combination of genetics and environment. There was nothing I could have done to prevent myself from catching Crohn’s disease. But I still went in search of a cause, which led to a lot of self-accusation. This is common among people newly diagnosed with a long-term illness.
Strangely, this self-guilt also reflects a false hope: if I caused this, then I can fix it. I was stuck in that phase for a long time. It made me mentally and physically sicker. I was not taking care of my body. After I accepted that I would have this disease for the rest of my life, I began to be able to treat it through proper care, such as finding a team of doctors I could trust and seeking the right treatments. Acceptance was a big step towards starting to feel better physically and mentally.
CNN: Let’s talk about the link between mental and physical symptoms. What did chronic illnesses teach you about mind-body interconnections?
Miller: Repeatedly in conversations I had with other people with chronic illnesses, they said that they could understand their physical symptoms, but they couldn’t understand why they felt terribly depressed, anxious all the time or how they felt PTSD.
It is a terrible service not to talk to people with chronic illnesses about the fact that they need mental health care from the start. Both doctors and patients seem to ignore the fact that his body – the very thing that carries him around the world – has become unrecognizable, changed, unpredictable.
Then there is the scientific reality that there is an intimate partnership between your body and your brain. Depression can make chronic illnesses worse. In addition to causing fatigue, mental confusion and body aches, it can make you no longer want to take your medications.
CNN: How does the US health care system affect the care people with chronic illness receive?
Miller: As I wrote in “What Doesn’t Kill You”, this book is not about the health care system, but it is entirely about the health care system, because people with chronic illnesses in America are at your mercy. We know that certain categories of people suffer worse results depending on the socioeconomic group, whether you are black or brown, female, fat, trans.
Something like Covid illuminates all the cracks in the system. We have to consider: Who lives in historically marked neighborhoods that still have higher rates of asthma? And who, racially and by gender, make up the population of essential workers?
When it comes to any illness, including chronic illnesses, consider who can go to a hospital and feel they will be cared for, rather than abandoned or mistreated.
CNN: You learned a lot about how to defend yourself. What tips can you share?
Miller: Yes, I have learned a lot in the last 10 years, but I want to make it clear that it is easier for me because I have privileges and power. I am white, thin and my illness is almost invisible.
Advocacy is a skill that can be learned. First of all, I recommend bringing a lawyer – a trusted friend or family member who knows your health history and can communicate with you with doctors if you can’t.
Second, always come prepared with a list of notes and questions. For people with chronic illnesses whose crises can be unpredictable, it is useful to take a package of health records with you. If you end up in a hospital where you’ve never been before, it may clarify that you’re not just in the emergency room looking for pain killers.
If a healthcare professional is being negligent, contemptuous, or does not take his concerns seriously, require him to write everything down in his medical record, including not continuing his care or sending him for further testing. Otherwise, send an email to the office to create your own documentation.
Miller: Before Crohn was identified in the 1930s, people did not believe his 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 aches and fatigue, while others have long-term heart or lung damage or even psychosis.
The first thing to do is to find your community. This will help you find other resources, including doctors who will believe you. As with all health care, this can be more difficult if you are not in a city. But there is telehealth. Tell your community what you need and people will help you.
I think of this quote from Viktor Frankl all the time: “Survival is a community event.” Community support cannot cure chronic illnesses, but it can make them easier to transport.