Many years ago, a woman came to see me. She had pain for a long time and had been through many treatments with only marginal improvement. Likely she had fibromyalgia. She had a troubled past with fragments of her narrative including sexual abuse, forays into substances to cope, and other physical ailments. But she had a spark of resilience and somehow came through all of that to carve a meaningful life for herself. Except now she was facing a rare terminal disease that would give her a few more years.
It was one of those moments, “Seriously? After all this crap, I've sort of figured out my life, and now this?" It was enough to make anyone weep.
Except she wasn't weeping. She came to see me just 'in case' there was anything else—something that wasn't tried. She had some pain from her terminal illness, but its cause was obvious and was managed well. She came to talk about the lifelong widespread pain. The cause of it remained a mystery as it shifted around her body, associated with other symptoms. Through our discussion it became clear to me she really wasn't expecting any miracles. She was knowledgeable about her pain and practiced a variety of self management techniques. I ticked the boxes of looking for other problems, scanning her treatment history, and concluded there wasn't much to add. So we just enjoyed our conversation.
Then something happened. My guard was down. The pressure to diagnose and cure was off. One human conversing with another, and I said, "You know, we aren't really sure why you've had all this pain. We can call it fibromyalgia if it helps. One day we'll have a better explanation."
I went on, "But since right now it's a bit of a mystery as to why it all came about, I can allow, that equally mysteriously, it could all just go away."
Two things happened next. First, a complete change came over her. If ever you could say someone's face was beaming, you would have said it here. With a big genuine smile, flushed cheeks, upturned chin, moist shining eyes, she said, "Really?!”
It was like I was suddenly explaining the wonders of nature to a little girl in the forest. It was a little alarming and lead to the second thing.
That part of my medical defenses that was down and taking a nap immediately woke up and commanded, What did you just do???!!! Did you just make a promise that you can't deliver??!! Flummoxed, I back tracked a little to a make sure she understood it wasn't a promise, but an allowance that mysterious things can happen. It was a bit unorthodox to say such things in a medical visit, but it didn't feel like a regular visit somehow. We talked a little more and then she left, appearing lighter. I sat alone wondering what had just happened, somehow heavier. I never saw her again.
I've thought a lot about that encounter over the years. Why was my reaction to her sudden happiness so fearful and strong? Internally, it was suddenly all about me and not her. What was it I had witnessed in her?
I realize now that it was hope. Hope is not tied to promises and is therefore free to give away without any strings attached to it. So why are we so stingy with it in healthcare? We talk about false hope. What exactly is that? Hope is hope. How can it be false? You are not on the hook for someone's hope. Promises are different, but we confuse the two. When allowing for hope, we don't want to mislead. We don't want to twist the statistical evidence of what has happened in the past to make things appear much rosier than they are. But I don't believe I did either. Obviously, it is much better if you can tie hope to strategies to bring about a desired outcome. In this case, I could not think of anything not already being done for her. My hands were empty and hope was all that was left.
On the other side is fear. An exchange took place in that encounter. She took on hope; I took on fear. I tied myself with strings to her hope. I made myself accountable to her hope, which led to the fear because I had no action to give her that would bring it about. The challenge, at least for me, is how to give hope without taking on fear, without feeling accountable for delivering the hoped for outcome, to be vulnerable. Is this wrong?
Perhaps this was a special encounter; after all I don’t go around to everyone saying, “Don't worry, it will all probably go away!” In fact, I'm not sure I've ever said it like that since. But I've become much less stingy with allowing for better outcomes than what is thought likely and encouraging more hope, usually tied with strategies.
With respect to fear a larger question emerges: why are we afraid to engage more deeply with people living with pain?
Are we afraid of being inadequate, looking foolish, standing with empty hands?
Are we afraid of being wrong?
Are we afraid of being swallowed whole by the depths of someone's suffering?
Is the pressure to rescue someone so great that we can't even bear to start the conversation?
Are we afraid that if we become known as someone who listens, cares, and gives hope that the throngs of the suffering will beat down our doors yearning to be cared for, touched, or at least for a moment, accepted?
I know that these are real fears for caregivers. Look, I’m no saint. I still struggle with all of them (where else would I find them?) but that encounter started me confronting them. There are practical realities behind some of the fears that need addressing through research and better system design. But many are just phantoms and say more about us, how we were trained, and how we work.
If you are a person with pain, do you get hopeful messages from your healthcare providers? Do you want more? Or is hope itself a waste of time for you?
If you are a healthcare provider are you afraid to give hope? If so, why? How do you give hope?
My wish is to see us change the recipe to at least two parts hope, one part fear.