Posted Jan 23, 2018 Toni Bernhard
Learn how not to add an extra layer of suffering to chronic pain and illness.
I became chronically ill in 2001. For several years afterward, I was a master at making a difficult situation worse for myself. The list is long, but I’ll limit myself to six ways in which I did this:
I hated my body for not recovering from what had appeared to be a simple viral infection.
I hated my mind because I thought if it were strong enough mentally, I could will myself back into health.
I blamed every doctor I saw for not being able to “fix” me.
I felt judged by family, friends, and co-workers because I was convinced they thought I was a malingerer since I continued to be in poor health.
I blamed myself because I thought I was continually letting others down by being so limited in what I could do.
I thought the world was being unfair to me. I resented the way all my plans—professional and personal—had to be dramatically altered.
My ongoing anger, blame (both self-blame and blaming others), and the belief I was a victim in an unfair world made me worse mentally and physically (after all, emotions are felt in the body). All six items on my list have one thing in common—they involve what I call Want/Don’t-Want Mind. I didn’t want to be sick. I wanted doctors to fix me. I didn’t want to have to change my life to accommodate my illness. And on and on.
Want/Don’t Want mind is a type of desire that makes things worse for us because, when we’re under its spell, we’re wanting—even insisting—that our lives be a certain way, even though we can’t control what’s happened to us. The fact is, sometimes people get sick. Sometimes they develop chronic pain. Sometimes doctors can’t fix them. And sometimes, as a result, people have to make drastic and unexpected changes to their life plans.
When this happens and we get stuck in Want/Don’t-Want Mind, waging a mental battle against the things we don’t control, we double our suffering by adding mental suffering to the physical suffering of the illness. And, if our chronic illness is a mental one, then we add a second layer of mental suffering to the mental suffering already accompanying our illness.
How did I learn to stop making things worse? Slowly, with patience and determination.
I’ll take up each of the six items I listed above and share how I began to stop engaging in the behavior they describe—behavior that was only making life worse for me. I still have “off” days, but I’m doing much better. Here’s each one, repeated in order:
First: I hated my body for not recovering from what had appeared to be a simple viral infection.
I hated my body because I blamed it for keeping me from working, from hanging out with friends and family and, in general, from doing so many things I used to enjoy.
One day I realized that hating my body was making my life worse because it meant I was hating myself, and that does not feel good in any way, shape, or form. It was as if I’d been launching a militant assault on my body with my Want/Don’t-Want mind—even though I had no control over the fact that I’d become chronically ill. Not only was this mental stance not helping with my symptoms; it was making them worse.
When I reflected on what was really going on with my body, I saw that it was working as hard as it could to make me feel as good as was possible. For example, it told me to stop visiting with others when I was at my limit; it told me to take frequent rests and not push myself beyond what it could handle.
Now I appreciate how hard it’s working, and I understand that it’s not my body’s fault that I’m chronically ill and in pain.
Second, I hated my mind because I thought if it were strong enough mentally, I could will myself back into health.
What in the world made me believe that I could “think” a virus-caused illness go away? It was yet another example of how Want/Don’t-Want Mind was making things worse for me. Gradually, I learned to stop treating my mind as weak and, instead, began using it to help soothe my body. I did this by silently speaking to myself in kind and compassionate ways, with words such as “It’s so hard to feel sick all the time” and “Take care, dear body, working so hard to feel better.”
This new attitude made a dramatic difference in how I felt physically and mentally. Gradually, I became my own unconditional ally who could accept with grace that bodies get sick and injured and old. It’s part of the human life cycle. No one can “will” that not to happen. I’d been asking the impossible of myself. When I traded hatred for self-compassion, the difference in how this eased both my mental and physical suffering was so dramatic that I felt reborn in a sense.
Third, I blamed every doctor I saw for not being able to “fix” me.
There are limits to medical knowledge, even among the best of doctors. Spending my time in a fruitless desire—sometimes insistence— that doctors fix me was only making me feel worse.
Yes, I saw some doctors who lacked compassion—who didn’t want to deal with me because they couldn’t “fix” me. I didn’t go back to them. But to blame all doctors for not being able to make me well was ridiculous. My primary care doctor has stuck with me for over 16 years of illness, accepting that he can’t magically make me better, but staying committed to helping me find ways to manage my symptoms.
One of the healthiest transformations in thinking that I’ve made has been to realize that it only made me feel worse to constantly be blaming doctors instead of appreciating the ones who are committed to helping me.
Fourth, I felt judged by family, friends, and co-workers because I was convinced they thought I was a malingerer since I continued to be in poor health.
Talk about making things worse! I had no evidence that the people in my life thought I was a malingerer, and yet I worried about it constantly. For a time, I was obsessed with it, wanting so badly to be believed that I’d spend my time coming up with ways to convince them that I was truly sick (since my illness is invisible for the most part).
Gradually, I realized that constantly worrying about what others were thinking about me was exacerbating my physical symptoms and causing unnecessary anxiety. Thankfully, I rarely care now whether someone believes that I’m sick. I know I am. My primary care doctor knows I am. Those who are closest to me know I am. They see it in my face. They see it in my limited energy stores—how I run down fast when we’re together.
I recommend that, as much as possible, you stick with those who support you. That will put a stop to tying your happiness and well-being to the obsessive desire that everyone believe and understand you.
Fifth, I blamed myself because I thought I was continually letting others down by being so limited in what I could do.
Before I got sick, it was important to me to always be reliable. Suddenly, what I could do on any given day was unpredictable and this added to my self-blame. Then I realized that unpredictability is the hallmark of chronic pain and illness. To fight that was waging a battle I couldn’t win.
I also realized that chronic illness requires “flexible friends” and that the only way to stop making things worse for myself was to let go of my fruitless desire for all my friends to be the way I wanted them to be (that Want/Don’t-Want Mind again). And so, I let some friendships go and I’m much better for it.
Sixth, I thought the world was being unfair to me. I resented the way all my plans—professional and personal—had to be dramatically altered.
No more career, no more travelling to see my children, no more travelling to my favorite haunts in Hawaii. Not fair! My resentment was sometimes so intense that I could actually feel it exacerbating my symptoms.
This belief that the world was being unfair to me was particularly hard to turn around. My Want/Don’t-Want Mind was in charge—wanting my career back, wanting to travel, not wanting to miss out on so many things.
The turnaround occurred when I seriously began examining the fact that life isn’t necessarily fair. It’s just life. We impose our desires and expectations on it, but life is uncertain and unpredictable. Stuff happens—stuff we wish were otherwise. But once it happens, our only chance at happiness is to make peace with our life as it is.
When I let into my heart this reality of the human condition, I was able to start anew. My starting point was a body that was sick and often in pain. From there, I had to make a new life. I couldn’t leave my home to teach in the classroom anymore, but I could write about this new life in a way that might help others, so that’s what I started doing.
Fairness and unfairness are not useful terms to me. I have to make the best of the life I have.
I hope all of you, chronically ill or not, will take a minute to reflect on ways in which you might be making life worse for yourselves. The truth is that stuff happens that we don’t like—it comes with the territory of being alive. The less we make things worse by imposing our Want/Don’t-Want minds on circumstances we don’t control, the better our lives will be.
© 2018 Toni Bernhard. Thank you for reading my work. You might also find these helpful: “A Not-To-Do List for the Chronically Ill” and “How to Talk to Yourself.”
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.
https://www.psychologytoday.com/blog/turning-straw-gold/201801/are-you-chronically-ill-don-t-make-things-worse
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