Support of a loved one takes many forms. Everyone who lives with chronic pain find different things most helpful. Sometimes they know what it is and sometimes not. Not only have I been living with chronic pain for over a decade but my spouse has chronic pain that we live with. Anyone who’s partner lives with chronic pain also lives with it. I have empathy and I get it. But it is not always easy to know how to be supportive or how to get out of the way.
Rhiannon has been having a nasty flair up for the last couple of weeks but last night her pain levels were going through the roof. She had gotten new creams from her doctor but they weren’t touching her pain. She was jumping and writhing.
We both hate going to the Emergency Room. We didn’t know what they could do anyway. But finally I called the advice nurse–I couldn’t stand by watching her suffer. By the time we talked with the doctor on call, Rhiannon’s pain was a 10 and she was crying. I am good in emergencies–other people’s emergencies. But it was so difficult to watch her in so much pain. I wanted to take it away. To somehow DO something. The only thing I could do was call the advice nurse and help explain.
We found out what her choices were and what could be done. We decided to drive a bit further to a hospital with less of a wait time. On the way she was in so much pain she was clutching the car’s hand hold and my hand, moaning and crying. She was breathing but it didn’t sound very deep.
“Try and breathe deeply,” I said helpfully a few times.
“I know how to breathe. You can’t breathe through this kind of pain. I’m doing the best I can. You reminding me is not helping!”
I felt powerless, useless, and I hated watching her suffer. I knew she was right. She has all the tools, she is a thriver, my job as her spouse and support was to be there, to hold her hand. Although later she told me I was squeezing her hand too hard. Being a witness is very powerful to some one in this state. Being there IS doing something.
And that is what I did. I got her to reception and made sure she was able to stand and talk to her. I left to move the car from the drop off lane and when I got back she was still slumped on the counter, jumping with each new assault.
They got her in a room and I went with her. I held her hand and stroked her forehead and hair. The nurse and doctor needed her to answer the questions. I ignored the impulse to jump in.
She does not take prescription pain meds for her pain normally. They said first thing was to get her pain level down so they got her a narcotic, it took about a half hour but her pain level came down to a 5 with zings of 7 or 8; much more tolerable. There was discussion of surgery which was more palatable when she was at a 10. Now, the idea of surgery is not looking like such a great idea. But that kind of pain can make anyone desperate. Not only the patient but their support. I was ready to have them do anything that would make it better, that would take away that agony.
Luckily the narcotic worked and we are hopeful that the rest of the treatment will clear everything up without needing an invasive procedure.
The person with pain is obviously suffering. What may not be so obvious is that their loved ones are too. We are fortunate that we have great communication, we know what we need in terms of support, most of the time and we are able to honor those needs, most of the time. You don’t need to know what chronic pain feels like to be supportive.
Last night I could feel all of my impulses to protect and take care of her–that was about me. I had to resist in order to truly be of help and support. In order to attend to her I had to get out of my own way and shift focus.
- Giving advice–> not helpful.
- Taking over–> not helpful.
- Getting a wheel chair–> not helpful
- Asking her to make a decision–> not helpful
- Being present–> helpful
- Holding her hand–> helpful
- Squeezing hand too tight–> not so much
- Staying calm–> helpful
- Driving her to ER–>helpful
- Being a sounding board–>helpful
- Taking her for pancakes after–> helpful
It is not easy to see one’s loved one suffering. It is not easy to be supportive in a way that is contrary to one’s natural inclinations. But what is worse is adding to the suffering by not being helpful. I had to breathe and remember that she knew what to do and that my being there was what she needed most. Not what I could do to fix it.
After 17 years together, we have self awareness, great communication skills, and experience of both of us living with chronic pain. We have discovered what is supportive, to ask for what we need and to ask to quit not helpful behaviors, and most of the time we are able to not take it personally.
Even now it takes reminding. As a pain coach I am good at the balance of support, witnessing, teaching and empowering. As a spouse I feel the pull of wanting to make it all better and to mask my powerlessness in the face of pain.