- 3 in 5 adults in the US have chronic medical conditions, a number predicted to rise post-COVID.
- Finding a doctor who believes you is an important step in managing a chronic illness.
- While dealing with physical ailments, don’t forget about mental health.
- Visit Insider’s homepage for more stories.
Tessa Miller got used to wearing a mask long before it was commonplace in the United States. She was already in the habit of social distancing too, sometimes staying home for most of flu season to avoid getting sick.
Miller has Crohn’s disease, an inflammatory bowel condition, and the medication she takes to treat it suppresses her immune system. She’s been chronically ill since fall 2012, and she’s come to accept that she’s never getting better.
“What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt,” Miller’s first book, follows that journey of acceptance. It’s part memoir, and partly the chronic illness manual she wishes someone had given her eight years ago.
She was nearly finished writing the book when the coronavirus pandemic hit. Now, “What Doesn’t Kill You” may be applicable to more people than Miller had foreseen; three in five adults in the US have chronic medical conditions, and that number is predicted to rise post-COVID.
"I wish that there wasn't a whole new generation of chronically ill people being created as we speak, from COVID, but such is the case," Miller told Insider.
"What Doesn't Kill You" is full of lessons Miller learned through having Crohn's disease, but her advice could help anyone with a chronic diagnosis.
For those coming to terms with chronic illness - whether it's Crohn's or lingering COVID symptoms - Miller has tips on how to navigate "our very frustrating healthcare system," find a good doctor, and look out for your mental health while accepting what it means to be sick forever.
Find a doctor you trust and respect, and expect they do the same for you
Doctors play a central role in any chronically ill person's story, Miller wrote in the second chapter of her book. She's seen more bad doctors than good ones, but the good ones have really made a difference.
"When you're chronically ill, you're not going to the doctor once a year to get a physical," Miller told Insider. "Your doctor is a partner in how well you can live with your chronic illness."
That means trust, respect, and communication must go both ways in the relationship between doctor and patient. A patient should leave their appointments feeling like their questions were answered and their voice was heard.
Chronic illness support groups and online reviews can help you separate the good doctors from the bad, Miller wrote. She also recommended writing down a list of symptoms and questions ahead of any appointment and bringing a loved one to serve as a "second brain" and advocate.
A note to doctors: believe your patients
Since releasing advanced copies of the book, Miller has received an outpouring of support from not only chronically ill people, but also the doctors who treat them. Some physicians have told her they want to incorporate her account of chronic illness into their medical school curricula.
If doctors should take away anything from "What Doesn't Kill You," it would be to believe their patients first, Miller said.
"Especially with something like long COVID, where we're really just learning in real time how it's affecting people, doctors need to default to their patients as the experts on this because they're the ones living with the symptoms," Miller said.
Don't forget about your mental health as you deal with the physical
One of the hardest parts of the pandemic has been watching people go through massive collective trauma, Miller said. She knows there's a wave of grief coming when the losses of the past year - not just loss of lives, but also of income and homes and what we used to call normal - hit us all.
Yet there hasn't been any mention of creating a federal mental health taskforce to do damage control. "If anyone can get me on the phone with the Biden administration, I would love to convince them why this is a necessity," Miller said.
Read more: We need talk about our mental health crisis before the worst of COVID winter hits
For people with chronic physical ailments, mental health is an especially vital part of the picture. Seeking out a good therapist is as important as finding a trusted doctor.
Early in Miller's illness, she didn't realize just how intertwined physical and mental health are. It took a series of blackout-inducing panic attacks - and finally going to therapy - for her to realize that her anxiety and trauma could be connected to her physical wellbeing.
"We should be caring for our brains just as we care for our bodies," Miller said.