I recently wrote a piece on comments that would be welcomed by the chronically ill (click here to read it). In this new piece, I’ll address how to respond skillfully to remarks that are unwelcomed. I’ll use two examples, both of which are comments that have been made to me and that others have told me have been made to them, often multiple times.
Let me start by repeating what I often say: being chronically ill can feel like a full-time job. This piece is yet another example of that. Responding to unkind and insensitive comments can require a lot of thought and energy. This is because there are several factors to consider before deciding what to say. Here are three:
It could be that the person who spoke is ignorant of what it’s like to be sick and/or in pain all the time. He or she intended no harm, even though the comment felt unkind to you. On the other hand, the person may very well understand the extent of your illness but have little tolerance for it. A person who speaks in this latter way may even be trying to hurt you with his or her words.
Even though a comment may have been insensitive, you may not want to hurt the speaker’s feelings or make him or her angry by responding honestly. Perhaps you love this person dearly or you’re dependent on him or her for your care (the latter could range from a family member to a doctor you’re seeing).
Speaking personally, on a day when I’m feeling particularly sick or in pain, I don’t have the energy (including brain energy) to respond in a way that might even educate the person about my illness. Here’s an example. Many years ago, I saw a doctor who, upon hearing that I’d been diagnosed with ME/CFS (the preferred name for Chronic Fatigue Syndrome), said to me: “Just drink more coffee.” (I write about this incident in my first book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.)
I was feeling so sick that day that when the doctor told me to just drink coffee, I didn’t have the strength to explain to him that a cup of coffee would neither cure nor help me. And so, I just let the remark go. It was a truly awful moment for me. Hopefully should that happen today and I had to let it go, I could do so with a bit more equanimity, knowing that sometimes people come through for me and sometimes they don’t.
Those are three factors to consider in deciding how to respond to unkind and unwelcomed comments.
Now, here are two examples of comments, along with how the above three factors might affect your response:
I’ve had this said to me several times, and I’ve lost count of the number of people who’ve told me it’s been said to them. The fatigue that the chronically ill often live with every day is not the same as being tired. Being tired can be remedied by getting a few good night’s sleep; the fatigue of illness and pain persists no matter how well a person has slept the night before.
So, how do you respond skillfully to this comment? Because of those three factors I just described, there’s not one easy answer. I’ll take them up one-by-one, starting with the person’s intent (factor #1).
If the person who said, “I’m tired too” is simply ignorant of the effect of chronic pain and illness, then his or her intent was not to be hurtful, and so I suggest that you explain in brief that the kind of fatigue you have isn’t the equivalent of being tired. Tell the person that you know what being tired feels like and this is different. If the person wants to know more, great. If not, move on to another subject.
On the other hand, if the person is deliberately disregarding that you’re terribly fatigued, maybe even trying to bait you by saying that he or she is tired too, then your answer may well depend on your relationship to the person (factor #2). If it’s someone you depend on for care, it may be wise to swallow the comment and let it go with as much equanimity as you can muster. In my view, sometimes it’s better to be silent and move on with a conversation (think of it as what the Buddha called noble silence).
And, of course, the third factor comes into play: how you’re feeling that day. If you’re so fatigued that you feel as if you’ve been hit by a Mack truck (a favorite description of mine), perhaps it’s best to do as I suggested in the previous paragraph and let the unwelcomed remark go so you can get back to your first priority which should be taking care of yourself.
Here’s the second example of an unwelcomed comment:
Vigorous exercise is often impossible for those of us who are chronically ill (it is for me). Once again, those three factors come into play as you decide how to best respond to this comment.
First, the person’s intent: if he or she is saying this to you out of ignorance about the effect of aerobics on your condition, I’d explain what vigorous exercise can do to you (it can land me in bed for days); if the person is interested, explain some more. However, if this statement was made in a challenging tone (someone with little tolerance for your illness or pain), once again your response may have to depend on that second factor: your relationship to this person.
If you're dependent on him or her for care, you may have to temper your answer so the person doesn’t feel as if you’re disregarding the so-called good advice. If the person feels disregarded, he or she may decide, “Well, if she won’t follow my advice, why should I try to help her?” That’s not good for you if you’re dependent on the person for care.
If it sounds far-fetched that a caregiver would stop providing decent care just because you didn’t follow one piece of his or her advice, dozens of people have written to me about a caregiver who did just that. My heart goes out to everyone in this situation. It’s as if you’re being held hostage by your caregiver.
I’ve only used two examples in this piece because my main point is that, no matter what unkind or unwelcomed comments you hear, before you respond, it helps to reflect on three factors:
This piece illustrates another way that being chronically ill can feel like a full-time job. I hope it was helpful. My best to everyone.
© 2017 Toni Bernhard. Thank you for reading my work. You might also find this helpful: "The Challenges of Living with Invisible Pain or Illness."