How to be sick: challenges faced by those with chronic pain and illness [PODCAST]

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“I write in my book, ‘I know from experience that nothing positive comes from directing blame at yourself.’ When it comes to chronic illness (which includes chronic pain), it’s crucial to remember that you are not the enemy. Anyone can get sick, physically or mentally, and anybody can develop chronic pain. I just got an email from a women who turned 20 last month and has been in chronic pain for most of her young life. Chronic pain and illness come with the human condition. It’s not your fault when they come calling. Don’t make things worse by adding self-blame to the mix. Instead, add self-compassion to help alleviate your emotional suffering.”

Toni Bernhard is a patient advocate and the author of How to Be Sick: Your Pocket Companion.

She shares her story and discusses her KevinMD article, “10 challenges faced by those with chronic pain and illness.”

This episode is sponsored by Elsevier Health. Looking to update your personal or professional medical library? Shop Elsevier Health’s Holiday Sale and save up to 35% on your purchase of medical books! Plus, you can take an extra 5% off your order with code KEVINMD at checkout. Take advantage of the biggest sale of the year from Elsevier, the world-leading provider of medical books and reference materials. Shop us.elsevierhealth.com now through December 31.

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Toni Bernhard. She is a patient advocate, and she wrote the KevinMD article “10 challenges faced by those with chronic pain and illness.” She’s also the author of the book How to Be Sick: Your Pocket Companion. Toni, welcome to the show.

Toni Bernhard: Thanks so much for having me. It’s great.

Kevin Pho: So we’ll get into your book and article in a little bit, but first off, can you share your story and your journey to where you are today?

Toni Bernhard: It will be 20 years in May. I live in California. My husband and I took a trip to Paris, and the second day there, I got a viral infection. The short version is, I never recovered. And so what’s happening now with COVID-19 is a bit scary, because you read about people, they’ve been giving them this label, long haulers, where they don’t recover completely after what we would just think of as a flu-like illness. And so, yes, I’ve been chronically ill and have also suffered from chronic pain for 19 and a half years.

When I got sick, I was a law professor on the campus at UC Davis, but the illness forced me to give up my career. Sometimes I like to say I had to trade the classroom for the bedroom. It was traumatic, and it took a while for me to accept what was happening. At the point that I did, I started writing books to help people who suffer from chronic pain and illness, to see if I could make their lives more, not just partly acceptance, but also bring joy and purpose to a life that they didn’t expect to be leading.

Kevin Pho: Now, you’ve written so many articles from a patient perspective on KevinMD, and I know that I, as well as my clinician audience, have learned so much from that perspective. Now let’s transition into one of those articles that you recently wrote, “10 challenges faced by those with chronic pain and illness.” For those who haven’t read that article, can you just walk my audience through it and maybe share the story of why you decided to write it?

Toni Bernhard: The first book I wrote was called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Buddhist-inspired basically means it’s coming from me, although I’ve studied some Buddhism. I wrote that book 10 years ago now, and my publisher asked me if I would make a pocket edition, because they’d been asked by people to have a small one they could carry around. And so I thought, “Well, that’ll be easy. I’ll just edit down the big book.” No, I wound up writing a new book.

What I did, because it’s hard, and you can’t just fit a large book format into a pocket-sized book, was approach it in terms of challenges faced by people with chronic pain and illness. It ranges from loneliness, to self-blame, to coping with disappointment after doctor’s appointments or treatments that don’t work, to handling friends and family who don’t understand what’s going on with you. And so I packed a lot into that little book.

The article you’re talking about, I really wrote as an introduction to the book, because I took those 10 challenges, but then in the article, I didn’t copy from the book. I wrote some text under each one because I wanted the article itself to be helpful. I didn’t want it to be an ad for the book.

Kevin Pho: So please share some of those challenges that patients with chronic pain and illness face. And what are some of your tips, advice, and solutions to address those issues?

Toni Bernhard: I start out with the big challenge, which is self-blame. A lot of people, and this included me almost 20 years ago, blame themselves when they become chronically ill. And when I use the term chronic illness, I am including chronic pain. You know, I got this viral infection, and everyone, including myself, was waiting for me to get better. And I’ve discovered through my books, where people then write to me from my website that my daughter put together, that chronic illness and chronic pain can enter a person’s life at almost any age.

You know, when I was young, I thought, “Well, this is what happens to people when they get older, maybe.” Well, I’ve discovered that it can happen to people at any age. And when it happens when you’re in your 20s, 30s, people are more likely to blame themselves, partly because family and friends don’t understand, and they think you’re mentally weak in some way.

The first thing I talk about is what to do about self-blame. What I tell people is, chronic illness is part of the human condition. There’s nothing wrong with you because you’re having medical problems. People write to me, and they say, “I never thought of that.” And I think this is, to some extent, a failure of our culture and the media to properly educate people about the fact that this is a normal part of life. And so that’s one of the things I try to teach people: to see that there’s nothing wrong with them because they’re having health problems, and to kind of turn it on its head and start treating themselves with compassion instead of judgment and blame.

We control very little in this life, but one thing we can control is how we treat ourselves. And when you show compassion, which simply means kindness, being nice to yourself, when you treat yourself with that kind of understanding, it’s very healing, because you’re showing yourself that you care about yourself, and that’s what’s most important.

Friends may drop away. That’s OK. They wish you well. They just aren’t able to accept. Sometimes chronic illness triggers fear in other people. And so it’s also very important, and I’m kind of moving on to another challenge, which is what you do about friends and family who aren’t on board with you. At first, I was very bitter about that, but I learned that it wasn’t about me. It was about them and their own fears, based on their conditioning and their life experiences, and that they wished me well. They simply couldn’t; they were too uncomfortable around chronic illness and chronic pain. And to be able to recognize that, again, not blame yourself for people slipping out of your life if they do, but instead feel kindness and compassion for them, and appreciation for those who do stick with you.

Kevin Pho: Now, throughout your years as a patient, can you share some of the support and different types of support that you’ve had throughout your journey?

Toni Bernhard: Well, I’m very fortunate to have a supportive spouse. My heart just bleeds for so many of the people who write to me from all over the world who are alone, many of whom weren’t alone when they got sick but had partners or spouses who didn’t stick around. So I know how fortunate I am to have a supportive husband.

I also have a wonderful GP. I’ve probably seen 30 specialists. I was trying to count them up the other day, in the 20 years since I’ve been sick, trying to figure out what to do. We think it’s an immune system problem, where my immune system reads me as sick. You know, my immune system is a bit of a medical mystery, I’ve learned. But I have a wonderful GP, and what makes him wonderful is that he accepts that he may not be able to fix me. You know, I wish all the doctors I’ve seen, and that people see, understood that you can’t always fix somebody, that you can be supportive and be open to treatments and be willing to try things. My doctor is very willing to try things that I bring to him, after he does some research and makes sure that whatever I want to try isn’t going to make me worse. That’s his standard.

And so I would urge people, if you have a doctor who isn’t understanding, who doesn’t want a patient that he or she can’t fix, keep up that search for a doctor who will kind of go on this journey with you and help you as best as he or she can. So my husband, my doctors. And I have two children who don’t live near me, but who, in some wonderful way, don’t treat me as sick, and it’s a treat. We do a lot of texting. So sometimes it can be a hard job to try to find people in your life who will support you the way you are, but it’s worth the effort.

Kevin Pho: And for those who write to you and are alone through their journey as a patient, what kind of advice do you give them, and what kind of resources can they turn to?

Toni Bernhard: Well, the first thing I do is to have them examine the people in their lives carefully, their relatives, even cousins, distant relatives, and their friends, and don’t rule people out as people who could support you. You may have a friend you haven’t been in touch with in many years, and if you got in touch, it may turn out that they have health problems too, and suddenly you’ve got someone who is supportive of you and who you can be supportive of.

And the other thing that I try to help people with is learning to, you know, I say I have wonderful support, but before the virus kept my husband home, he was gone a lot of the time, and I had to learn to enjoy being alone. And so a lot of people write to me about lack of support and loneliness. And, you know, being alone is a neutral state. There’s not anything negative about being alone. Loneliness can be very painful, and what I talk to people about is how to befriend your loneliness, to see it as almost something that’s going along with you on your journey.

And I don’t usually use that word, journey, but there’s a wonderful quote from a book called The Dive From Clausen’s Pier, which is a fiction book, but she says, “Loneliness is a funny thing. It can become a friend if you let it.” And if you open your heart to the loneliness, and even the pain of loneliness, it helps you learn the joys of what I would call solitude, as opposed to loneliness. And so I had to learn to enjoy, and now I would say treasure, solitude. I think it’s something everyone can work on, and I give a lot of ideas in my big books and my little pocket book about how to go about doing that.

And the first thing you have to do is let it into your heart, because as long as you’re hating that loneliness, it’s almost like it feeds it. And so again, this takes me to self-compassion, because when you open your heart to painful emotions such as loneliness, it’s amazing how it softens the feeling and makes it easier to live with, because you’re showing yourself that you care about your suffering.

Kevin Pho: We’re talking to Toni Bernhard. She’s a patient advocate, and she wrote the KevinMD article “10 challenges faced by those with chronic pain and illness,” and she’s the author of the book How to Be Sick: Your Pocket Companion. Toni, you mentioned that you’ve had a whole team of primary care doctors and specialists over the years. What would you say is the number one thing that was positive that he did that resonated with you, and one thing that you think, in general, doctors can improve upon?

Toni Bernhard: The best thing that’s happened to me is my primary care doctor, who I mentioned, because he doesn’t feel he has to be God. He accepts that he may not be able to cure whatever it is that’s wrong with me. We really don’t know what happened when I got that virus and didn’t recover, but he is supportive and open to my suggestions.

Now, I’d like to contrast that with some of the specialists I’ve seen. I would go to see them. I haven’t now for several years, but especially when I first got sick, they would say, “Oh, I’m going to cure you. Do this test, this test, and this test, and bring them back, and I’ll fix you right up.” I’m obviously shortening that. And I would do that, and when they couldn’t figure out what was wrong with me, they didn’t want to see me anymore. I call it the hot potato treatment, like, “No, off you go.” Kevin, I’ve had that happen, unfortunately, with at least a dozen specialists.

And I would contrast that with the wonderful doctor I saw who was an endocrinologist, because my GP was sending me to every specialist he could think of to try to figure out what was wrong. She said, “I don’t know if I can help you, but I’m going to do my best,” and she ordered several tests. I came back to her, and she was honest with me and said, “I’m really sorry, but I don’t know how to help you.” And I appreciated that so much.

So that’s the contrast, just a doctor being a good listener and then being honest with you, instead of making you feel as if. I remember one appointment with a neurologist who said he was going to fix me, and I remember my husband driving me home from that appointment, and the two of us were so elated. I thought, “This is it. This is it.” And at the follow-up appointment, he had no interest in me, and it was heartbreaking for both of us, for myself and my husband. So that’s what I would ask of doctors: to be honest with your patients and to not feel as if you have to have all the answers. No profession has all the answers. So that’s what I would say.

Kevin Pho: And my final question, Toni. What is your take-home message that you want to leave with the KevinMD audience?

Toni Bernhard: Well, first of all, I want to encourage everybody to protect yourself from COVID-19, and that means masks, social distancing, no crowds inside, and even when you’re inside, good ventilation. So protect yourself, and when you protect yourself, you’re protecting others. And the other thing I would say, which I’ve touched on already, is to be kind to yourself about whatever health problems you’re experiencing. It is not your fault that you’re struggling with your health. It’s part of the human condition. It happens to everybody. Be kind to yourself.

Kevin Pho: Well, Toni, thank you so much for sharing your insight and time, and thanks again for being on the show.

Toni Bernhard: Oh, thank you for having me. Thank you so much.

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