Over the next few years, Miller tried dozens of medications, was admitted to the hospital more times than she can remember, and needed three fecal transplants. She visited gastroenterologists, allergists, oncologists, pain medicine specialists, endocrinologists, gynecologists and neurologists.
Her eventual diagnosis of Crohn’s disease eventually explained the “inflammation, ulceration, bleeding, tears, abscesses, intestinal constriction and all sorts of gingival stuff” in her digestive tract.
This conversation has been edited and summarized for clarity.
CNN: You paint a vivid picture of the complexity of sadness. What have you learned about loss that can help others?
Tessa Miller: After my father died of liver failure in 2008 due to long-term alcoholism, I felt what I considered ‘classic sadness’. I was unreachably sad and thought I would just spend the rest of my life on my own sad planet.
When I was diagnosed with Crohn’s, I was angry – just angry all the time. The feeling that no one else could understand what it was like for me exacerbated the anger. I flattened and buried my anger, which led to great anxiety and eventual panic attacks.
Whether we lose a loved one or have lost our own health to Covid-19, many of us grieve over a world that no longer exists, or the loss of our jobs, our homes or any sense of routine or normalcy . We grieve many things at once.
It’s time to dump her and move on. People expect grief to often be a unique emotion when it really is five, eight or 12 emotions, sometimes at the same time. Take time to think about all the feelings and understand that you are in mourning.
CNN: In times of struggle, many of us cling to what you call the ‘illusion of control’. Why is it important to pierce that illusion with realism – even if 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 through my entire life history to find what caused it, I would be able to find the remedy. But as a science writer, I knew my illness stemmed from a combination of genetics and environment. I could do nothing to stop me from getting Crohn’s disease. But I still went looking for a case, which led to a lot of self-blame. It is common among people who have just been diagnosed with a long-term illness.
Oddly enough, that self-blame also reflects false hope: if I caused it, I can correct it. I was stuck in that phase for a long time. It made me mentally and physically ill. I did not take care of my body. Once I accepted that I would contract this disease for the rest of my life, I managed it through proper care, such as finding a team of doctors I trust and following the right treatments. Acceptance was a big step in making me feel better physically and mentally.
CNN: Let us discuss the connection between mental and physical symptoms. What have chronic diseases taught you about body-to-body interconnections?
Miller: Over and over in conversations I had with chronically ill people, they said they could understand their physical symptoms, but they could not find the reason why they felt crushingly depressed, anxious, or as always. PTSD.
It is such a bad service not to talk to chronically ill people about the fact that they need mental health care. Both doctors and patients seem to reject the fact that your body – what you carry around in the world – has become unrecognizable, altered, 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. Apart from causing fatigue, fog in the brain and pain in the body, you also cannot use medicine.
CNN: How does the US healthcare system affect the care that people with chronic illnesses receive?
Miller: As I wrote in “What Do Not Kill You”, this book is not about the health care system, but this book is all about the health care system because chronically ill people in America belong to grace. We know that certain categories of people have worse results, depending on the socio-economic group, if you are black or brown, a woman, fat, trans.
Something like Covid relieves all the cracks in the system. We need to consider: Who lives in historically reclaimed neighborhoods, which today call even higher asthma rates? And who is, by race and by gender, the population of essential workers?
When it comes to any illness, including chronic illness, you need to look at who can go to a hospital and feel if they are going to be cared for, rather than being abandoned or being treated badly.
CNN: You have learned a lot about pleading for yourself. What tips can you share?
Miller: Yes, I have learned a lot over the last ten years, but I want to make it clear that it is easier for me because I have privilege and power. I am white, thin and my disease is mostly invisible.
Advocacy is a skill that can be learned. First, I recommend bringing a lawyer – a trusted friend or family member who knows your health history and can communicate with you to the doctors if you are unable to.
Second, always come prepared with a list of notes and questions. For chronically ill people whose flare-up can be unpredictable, it helps you to take a pack of health records with you. If you end up in a hospital where you have never been, it may be clear that you are not just looking for painkillers in the ER.
If a healthcare provider is negligent, dismissive or does not take your problems seriously, then demand that they write everything down in your table, including that they do not continue with the care or do not send you for further tests. If not, send an email to the office to create your own paper trail.
Miller: Before Crohn’s was identified in the 1930s, people did not believe in their symptoms. They suffered and died because their illness was still a mystery. Long Covid is so new and the symptoms vary so 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 find your community. This will help you find other resources, including doctors you will believe. As with all healthcare, it can be more difficult if you are not in a city. But there is telegealth. Tell your community what you need, and people will help.
I keep thinking of this Viktor Frankl quote: “Survival is a community event.” Community support can not cure chronic diseases, but it can carry them more easily.