I hope this piece helps everyone understand chronic pain and illness better.
I’ve been chronically ill for over 18 years (chronic illness includes chronic pain). In 2001, I came down with what appeared to be an acute viral infection but I never recovered. It compromised my immune system, leaving me feeling as if I have the flu 24/7. I call it the flu without the fever.
Not everyone will go through these stages in the same way or in the same order that I have, but I’m confident that this list will sound familiar, both to those who are chronically ill and to those who care for them (if the former are fortunate enough to have the latter—I recognize that not everyone is).
First, of course, comes the investigation into what is suddenly wrong with you. And so I’ll start with:
Stage 1: The search for a diagnosis and adequate treatment
Getting a diagnosis can take one doctor’s visit or it can take dozens. It took me six months to be diagnosed with ME/CFS (myalgic encephalomyelitis, also known as chronic fatigue syndrome). However, being diagnosed, I must admit, hasn’t helped me much. ME/CFS is a serious illness, but the money isn’t there for research into its cause or causes, let alone adequate treatment. (I live with several other chronic conditions, including a bout with breast cancer, interstitial cystitis, and osteoarthritis, but this post focuses on what I went through when I got sick in 2001, as described above.)
The search for a diagnosis and then adequate treatment is accompanied by the stresses that come with having to navigate the health care system—over and over. It takes its toll, both physically and mentally, even for those of us who are fortunate to have adequate health insurance.
As I write about in my book, How to Be Sick, since 2001, I’ve seen over a dozen specialists and my share of alternative medicine practitioners (including five acupuncturists). Very few of these doctors and practitioners were honest with me about what they could offer. Most of them promised to cure me and then, when whatever treatment regime they prescribed didn’t work, they wanted me to go away. I call this the hot potato syndrome, as people who are sick and in pain get passed from doctor to doctor, from medical practitioner to medical practitioner.
The search for a diagnosis and then, adequate treatment, is a traumatic—and often ongoing—stage in life with chronic illness.
Stage 2: Denial
When I got sick in 2001, I expected to recover. So did everyone else in my life—from family to friends to my employer to my colleagues. The idea that I had a chronic illness that would change the course of my life at a point when everything was going so well for me, personally and professionally, was unthinkable. When something is unthinkable, denial takes over.
For me, denial felt as if something were tearing me apart mentally. I was denying mentally what I was feeling physically. In other words, I felt sick while, at the same time, I was denying that I was sick. Imagine if you were eating ice cream while, at the same time, you were denying you were eating ice cream. It’s an extreme example, but it gives you a sense of how this contradiction is so harmful mentally and emotionally.
Denial was harmful to me in another way. Because I could not bring myself to believe that a simple viral infection could keep me feeling so sick and in pain, I forced myself to go back to work part-time after taking six months off. I was a university teacher. Once back at work, I spent the next two years going from my bed to the classroom and then back to my bed when I could pull it off. I held office hours via email.
Even so, sometimes I met with students in my office (I was still committed to doing the best job I could, after all). Those days, I could barely make it back to my bed. I think it’s highly possible that continuing to work is one of the reasons I’m still so sick today. (ME/CFS presents with different degrees of severity. Some people can travel if they allow for rest periods. Others are completely bedbound.) My illness is on the severe side but I’m not completely bedbound. I spend almost every day at home. If I do go out, it’s not for more than an hour or so (unless I get caught at a doctor’s appointment). I’m usually on my bed, as I am now, typing this.
Stage 3: Worry and fear
When I could no longer deny what was happening, I finally traded the classroom for the bedroom. Unfortunately, denial was replaced by worry and fear. How was this illness going to affect my life? Would I still be able to travel to visit my grown children? (No.) Would we be able to keep our house when we lost our income? (Thankfully, yes, although I know of many people who weren’t able to.) What would happen if I developed another health problem? (I did: the breast cancer I referred to above; even though it exacerbated my chronic illness, I pushed my way through surgery, subsequent treatment, and now, ongoing monitoring—and my prognosis is good.)
And, how would being chronically ill affect my relationships? I am blessed beyond measure to have a loving caregiver—some spouses and partners don’t stick around when chronic illness strikes. But, as happens with others, many of my friends drifted away. It took me years stop feeling bitter about this—to realize it wasn’t due to any personal shortcoming on my part. It had to do with other people’s own life stories. For example, some people aren’t comfortable around illness. I know that those who’ve “gone missing” wish me well and, although it’s taken a long time, I’ve learned to wish them well in return…and that feels good.
Stage 4: Grief
Allowing myself to grieve over what happened to my life was the first step in healing mentally and emotionally. In my experience, you can’t grieve when you’re in denial or when you’re overwhelmed by fear and worry. This is because grieving requires that you give attention to your sadness. You have to make room in your heart for grief, and when you’re caught up in denial, worry, and fear, there’s no room.
As others have pointed out about chronic illness, grieving is not something that arrives, is processed, and goes away. It comes and goes throughout the course of pain and illness. It has for me all these years.
Stage 5: The realization that you have to “make your own fun”
I used the odd phrase “make your own fun” in this heading because of a documentary I watched on Fred Rogers. It’s been many years since our kids were young but, yes, Mr. Rogers used to be our neighbor. He said in an interview that he had a lot of childhood illnesses, including scarlet fever, and so had to spend a lot of time in bed. Then he said: “And so, I had to make my own fun.”
The moment I heard that, I recognized that it’s what I’ve had to do. It’s been a big part of the emotional healing that started for me after the grieving process began. I realized that I needed to make a new life for myself. I saw that my craving to resume my teaching career and to travel with my husband to our favorite places were dreams that were unlikely to come true. It was better for me to find a life of purpose and joy within my limitations. And I think I have. I discovered writing. I embroider, listen to audiobooks, and cuddle my dog. When I can, lying on the bed, I use exercise bands as my form of exercise.
I still hope to recover my health—I continue to try new treatments—but my quality of life became better when I started to accept my limitations and when I began to generate self-compassion for those inevitable moments of sadness that arise now and then.
These are the five stages of chronic illness I’ve experienced over the past 18 plus years. I’m no longer in denial. For the most part, I’m able to keep worry and fear at bay. So, if I start to fret, for example, over what would happen should my husband be hospitalized, I remind myself that it’s foolish to use my precious time worrying about this because no one can predict the future. (This is not to say that it’s foolish to plan for such contingencies; my suggestion is to come up with a plan and then, as best you can, put the contingency out of your mind.) I love the quotation that’s usually attributed to Mark Twain although other versions of it abound on the web: “I’ve had a lot of worries in my life, most of which never happened.”
I still grieve once in a while and feel unhappy about my fate. I’ve noticed that these painful emotions are most likely to show up on days when my symptoms have flared. Becoming aware of this has been tremendously helpful. It enables me to say to myself: “Hold this grief and sadness lightly. You know it’s shown up because you’re feeling so sick today. When your symptoms subside, so will your emotional pain.”
My heartfelt wish for all of you is that you find a life of purpose and joy in the midst of your health struggles.
About the author
Toni Bernhard, J.D., is a former law professor at the University of California, Davis. She's the author of How to Be Sick, How to Wake Up, and How to Live Well with Chronic Pain and Illness.