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Dealing with a chronic illness takes a toll on the body, mind, and spirit. A complex mix of emotions—sadness, anxiety, confusion—often accompanies the physical suffering, and the constant questions and worries are exhausting: Why is this happening? Is this my fault? How can I recover? Will I ever be well again?
I’ve provided therapy for many men and women who found themselves in this position, but I had a more intimate understanding of their experience when I developed a chronic illness myself in my early forties. A few annoying symptoms grew insidiously into a perplexing cluster that started to limit my activities: nightly insomnia, bouts of profound fatigue, vocal difficulties, an inability to tolerate heat or cold, a strange lack of sweating, mental confusion, digestive problems, along with many others. Like so many people with long-term illness, I was also forced to significantly reduce my work hours, which created financial strain and uncertainty.
Being sick for a long time is a great opportunity to practice kindness toward yourself, but unfortunately, self-compassion is rarely our go-to when we’re suffering. Many of us are more inclined to be self-critical, blaming ourselves for our illness and for not getting better. You might also feel ashamed and embarrassed by your struggles, as I was, especially if the medical establishment has not been able to find the cause. That was the situation I found myself in for over three years as many visits to various specialists failed to yield any answers. (Recently, I was diagnosed with what appears to be mold toxicity.)
I spoke about these issues on the Think Act Be podcast with Dr. Jill Carnahan, a functional medicine expert who specializes in understanding and treating the root causes of disease. Dr. Carnahan has gone through major illnesses of her own—breast cancer while in medical school, Crohn’s Disease, her own experience with severe mold toxicity—and so has an intimate understanding of dealing with illness both personally and professionally. Here are five of her recommendations.
1. Let Your Experience Be What It Is
Our lives necessarily change when we’re sick, but we often tell ourselves we have to keep up with everything we could do before. “The expectations we have for ourselves, or that we think others have of us, can be so difficult,” said Carnahan. “We feel like we have to have the perfect career and the perfect family and the perfect home life and the perfect relationships, and it’s really an impossible standard we hold ourselves to.”
Countless times I expressed hatred toward myself for the problems I was experiencing and the ways they had affected my family, in language not fit to print on this blog. It took me more than two years to finally accept my limitations, and adjust my work and personal life accordingly. Self-compassion took longer.
Carnahan noted how destructive self-directed anger can be. “We have to deal with those toxic emotions,” she said, citing the powerful effects of our mental and emotional state on our physical healing. “There’s a clear connection between self-hatred and autoimmune disease,” she continued, “and it makes sense because it’s your body attacking self.” She found that self-directed anger contributed to her own autoimmune conditions (Crohn’s, Hashimoto’s Thyroiditis), and that her healing accelerated when she learned to express difficult emotions like sadness and anger more directly.
2. Remember That You’re Doing the Best You Can
We often criticize ourselves for not getting better when we’re sick, as though if we just did all the right things, we would be healed. But chronic illnesses typically don’t work that way—that’s why they’re chronic. I went down the road of thinking I could get well just by finding the right diet, and would blame every symptom flare-up on having made the wrong food choices. But no matter what I ate or didn’t eat, I continued to experience daily ups and downs.
So keep in mind that you’re doing the best you can to understand, manage, and heal from your chronic illness. Some factors are in your control, such as controlling stress and getting adequate rest; in my own case, diet does have some impact on my condition. At the same time, beware of the belief that you must be doing something wrong if you’re still sick. Even if there is a knowable cause, it often takes years to discover it (as it did in my case).
3. Know That There Will Be Ups and Downs
Many chronic illnesses have a very unpredictable course, and some days can be much better or worse than others. I used to blame myself for having rough days after a good day, thinking I must have done something to mess up my recovery. But more likely than not, these kinds of fluctuations are part of the illness, and aren’t completely in your control (if at all).
Also remember on bad days that there will probably be better ones, likely when you’re least expecting it. I was often surprised by a break in my symptoms, sometimes after a really difficult stretch that I feared would never end. As much as you can, appreciate these periods of respite. Even if they don’t last forever, they provide a welcome breather and a reminder of what it’s like to feel better.
4. Don’t Judge How You’re Dealing With It
There will be days during your illness when you feel good about how you’re handling it. Maybe you’re remembering to live as fully as you can, even if your health is far from perfect, and you’re finding gratitude for the abilities that you still have. You’re “leaning in,” practicing acceptance, opening to the complicated mess of life as it unfolds. In some way, you feel like you’re being sick “the right way.”
And then you reach a breaking point. Maybe you realize that you’ll have to miss an important family event because of your illness, or you’re reminded of things you used to love doing that are no longer an option for you. Or perhaps you’re just worn down. One way or another, you reach your limit and you’re just sick of it. You feel sad, angry, frustrated, bitter, and dispirited. And then you feel guilty for losing the perspective you were enjoying.
Those moments will happen. (Trust me, I’ve been there.)
“The judgments we have in our minds about how we’re doing is part of what causes the suffering,” said Carnahan. We need to be understanding toward ourselves when we bottom out and don’t feel like we’re handling our illness the way we want to. “If we fall apart a couple of days a month, or we feel sad or lonely or overwhelmed—those things are okay and they’re normal,” she said. “You don’t have to judge yourself for how you’re dealing with it.”
5. Seek Out Friends and Family Who Get It
When you’re sick it’s common to withdraw from your relationships—an understandable reaction when energy is low and you don’t feel like yourself. But supportive loved ones are invaluable, especially when you’re going through a hard time. I can’t count all the times that my wife showed me love just when I needed it, when I’d reached the end of myself.
“It’s really important to have community,” said Carnahan, “and to reach out and make sure you have connection with human beings. I’m a super independent person and thought I could do it alone. But the more I grow, the more I realize how critical it is to have connections and relationships and to be able to ask for help when we need it.” Being willing to ask for help is a critical part of self-compassion.
Carnahan recommends being clear about what you need from your loved ones. “It’s easy to either assume they know what you need or to not speak up,” she said. “Most of the time family or friends really want to help, they just don’t always know how. They may be uncomfortable about your diagnosis or intimidated by the fact that you’re sick.” Thus, it's important to communicate your needs as directly as you can.
You’ll probably need to be selective about who you spend your time with while you’re sick, focusing your time and energy on loving connections with those who understand your condition and your limitations (without reducing you to A Sick Person). “Those are your inner circle—your trusted few,” said Carnahan. “They won’t take it personally if you need to cancel or change plans, because you woke up feeling great but then by ten o’clock you’re exhausted and need to lie down.”
If you’re dealing with a chronic illness, self-compassion is a crucial part of your treatment plan. What’s one way you can move toward greater self-compassion starting today?
The full conversation with Dr. Jill Carnahan is available here: Finding Faith and Purpose on the Road to Healing.
