My family and close friends have done so much for me since I became chronically ill in 2001, and I’m deeply grateful to them. I’ve written this piece because there are a few important things I want them to know about how I feel.
Although this piece is personal in nature, I’ve been hanging out online for over a dozen years with other people who are chronically ill (which includes those in chronic pain), and so I feel comfortable speaking for all of us. I recognize that when it comes to chronic pain and illness … and loved ones, one size doesn’t fit all (as is true with all things in life), but here’s what I think most of us want our loved ones to know about us.
1. The grief we feel over the life we’ve lost may re-emerge now and then … indefinitely. One life event that appears on all versions of “life stress scales” is serious illness. It’s considered a grief-producing event, as are other major life losses, such as the loss of a relationship due to separation or death.
Until I became chronically ill, I had no idea that the people I knew with ongoing health struggles were grieving. Now I know that there’s a lot to grieve over — the loss of the ability to be as productive as we once were, the loss of friends, the loss of the ability to take part in cherished activities, the loss of independence.
Grief comes in waves, and so it can arrive unexpectedly. One moment, we can feel accepting of the changes in our lives. The next minute we can be overcome by sadness. And it can be triggered by a simple interaction. For example, I thought I was done grieving about my lost career. It’s been over a decade since I had to stop working due to illness. But then, one day, I ran into a former colleague. She began to describe all the changes that have taken place at the law school where I taught. To my surprise, a wave of grief overcame me, and I had to work hard not to break out in tears in front of her. This happened even though, were I to recover, I wouldn’t return to my old profession.
2. We can feel as if we’re letting you down even though you’ve repeatedly told us that we’re not. I have two close friends whom I try to see each week. Both of them have told me that if I’m not feeling well enough to visit, I should cancel and that I should not feel bad about it. And yet, whenever I have to cancel, I feel as if I’m letting them down even though I believe them when they say that they don’t want me to feel bad.
Related to this feeling of letting loved ones down is that we may apologize for being sick and being in pain even though it’s not necessary. I find myself apologizing to my husband, my children, and to close friends for not being able to join in activities with them, even though they’re not expecting me to go beyond my limits and even though they don’t want me to.
I’ve decided that it makes me feel better to apologize. It’s my way of saying to them: “I know that my inability to do a lot of things and the unpredictability of how I’ll feel on any given day is no fun for you either.”
3. Being chronically ill can be embarrassing. The major reason people are embarrassment-prone is that they’ve set unrealistically high expectations for themselves and then judge themselves negatively when they can’t possibly meet those standards.
We don’t have to look far to see the unrealistically high expectation and the negative self-judgment that are at work here: we don’t think we should be chronically ill. We live in a culture that repeatedly tells us we need not be sick or in pain, even though in the United States alone, 130 million people suffer from chronic illness. My loved ones accept my illness and yet I still can find myself embarrassed in front of them about the fact that I’ve been sick for so many years.
Sometimes guilt creeps in, too, because I can feel as if I’ve let them down. There’s no rational reason for me to feel guilty. None of my loved ones has never said anything to me that suggests they think I’ve let them down, but there it is — guilt — the painful feeling that I’ve done something wrong.
There’s a second reason that being chronically ill can be embarrassing. In addition to the cultural message that tells us we can all be healthy and fit, I feel as if the state of my health should be a private matter. We keep many other intimate details of our lives private. Why not chronic pain and illness? The answer is that most of us don’t have the luxury of keeping our medical conditions private. We have to explain to our loved ones why we can’t do this and why can’t do that; why we have to cancel plans at the last minute; why we have to suddenly sit down or leave a gathering early. And so, instead of keeping this intimate part of our lives private, we’re forced to talk about it and that can be embarrassing.
Third, most of us cherished the independence that came with good health. We find it embarrassing to have to continually depend on loved ones to do so many things for us, from cleaning to shopping to supporting us financially. I know many chronically ill people who have been forced to move back into their childhood homes because they’re unable to care for themselves or because they can no longer afford to live independently. Having to tell others that you had to move in with your parents can not only be a source of embarrassment, but even worse — shame.
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We appreciate so much all that our loved ones have done to educate themselves about our medical condition, to take care of us, and to support us. These are simply three additional things that that we want them to know about us.
Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.
