I've been visiting her for several months, mostly working on her chronic pain. Sometimes, before a visit, I think about how hard it is to sit with her. She is really depressed. And really in pain. Some of it is existential, but most of it is physical pain from underlying physical pathology. Our work together has gone like this--little gains, then big setbacks. Trodding along trying to help. Showing up, but wondering if it mattered, since her pain is as bad as it was when I met her. Now she has been skipping dialysis, ending up in the emergency room with potassium levels high enough to stop her heart. Her nephrologist doesn't understand why she keeps skipping appointments. He is worried about her. A whole slew of people are concerned. As they should be.
So I asked her, what happens? And she told me. I just can't stand the sessions. It starts out ok, but then I get sick. And wiped out. And the worst thing is the pain in my legs is about 100 times worse after dialysis. Every time.
I told her that pain during dialysis was not so uncommon. There are many reasons for this, in her case I thought maybe the opioid she was taking was "washed out" by dialysis, and sort of threw her into a pain crisis after dialysis.
And this is what she told me:
After so long, I almost can't believe that there is a reason for it. But just this week, one of the nurses at dialysis told me that other patients miss dialysis appointments for all kinds of reasons, but often it's because of pain. I'm not the only one. I can't believe no one told me this before. It's important to feel that you're not alone with these problems. I feel a little bit like some freak, somehow, a noncompliant, aberrant misfit. Even if I were 100%, going to dialysis isn't easy. I've been doing this for 9 years. Being in constant pain makes it so much harder to go to dialysis. It helps to know that there are others having similar problems. It helps that someone wants to help with the pain. It helps keep me from falling into that shell where I just feel so alone with this. It helps allay some of the anxiety and depression that goes along with the pain and lowers my resistance to the pain.
What could I say after that? But I managed to say this much: I don't know if I can help to lessen the pain. I don't have that many more tricks up my sleeve that are safe for you to try. But I haven't given up. I won't give up. And I won't abandon you.
Sometimes we lose sight of how much acknowleging pain and sitting with a person in pain is worth. And really, anyone can do these things. Me. Or you. For example.