Sitting In It

Or "The Crystal Ball Method of Informed Consent"

‘Why didn’t I know how hard this was going to be?  When is it going to get better? Will it? Is it even worth continuing?’  I don’t know how much longer I can keep going, especially when I hear there isn’t an answer to this yet; my pain isn’t going away!’  As a child I felt that myself sometimes, and I think my patients feel that way sometimes, too.

I try to help patients and families for a living - I teach, support, problem-solve, empower.  At least those are my goals. I think about my patients, I listen to them to understand ways I might help them help themselves.  Nevertheless, I find myself at times staring into my patients’ eyes, helpless to give them an immediate sense of release from pain, a sense of hope that better things are coming. And, during these times, I wonder to myself, ‘How can I tell them that part of coping is preparing for moments when there isn’t an answer, a solution, even just a momentary end to the pain?’

A few weeks ago I sat in a room with a patient I had not met before.  Here is what I already knew about him from the team: He is a bright, engaging, easy-to-like young man, very selfless and giving to others, who had suffered several years ago, found help, and got some good parts of his life back.  He is a terrific patient; he and his family listen, they follow recommendations, they reinforce the team as much as the team tries to reinforce them. His parents suffer when he suffers; and the team suffers with them.  But things had recently not been going so well!

When I met him, the flare had already been going on long enough to cause him to quit thinking so much about his future, quit enjoying some of the things that gave him pleasure.  He wasn’t able to be in school; he wasn’t as connected to his peers now; his daily life lacked any, for want of a better term, joy.  I don’t think I can say he was completely hopeless but he admitted it was difficult to find hope.  This bright, engaging young man had been trying to keep up in a negative, pain-filled situation and had lost ground in his own quest.  And there I sat, trying to help him find something to hold on to, something to move forward with and give him hope.

If I could, I would take a crystal ball and go back in time with him.  I would display the most excellent times, when he felt no symptoms and just moved forward with the normal joys and struggles of development; friends, school, identity development, relationships.  They are all hard enough!  And they all come with great potential for fun, meaning and growth.

Then I would show him the flares; the pain, blood, worry, frustration.  I would tell him how long before things got better; I would help him understand that sometimes the best coping mechanism is just sitting in it, with the unknown, and going on, being at peace as much as possible.  That coping can be finding a different thing to focus on, as a distraction and a way to keep moving forward, a support to use that feels comparatively better than being without it.  That it is actively planning how to keep up with things like friends and relationships, but it is also standing up and saying “I don’t like this and I want to try something different.”  And, after that, not stopping until he is heard and feels some control in his situation, with the medical team if not his body.

As a child I remember, at times, feeling very alone in my uncontrolled asthma, and thinking, when I was explaining my symptoms and my desire to feel better, that I was yelling weakly, but as hard as I could, into a canyon. And no one yelled back.  It got better, but a few times I didn’t know it would. I don’t want my patients to feel that.

Sometimes coping is not being able to do anything about the pain or frustration but having the ability to hang on, and know someone is hanging on with you, beside you, for you; and that, together, neither of you is going to give up. It’s not great, but maybe it’s good enough, and it can be enough for today.