This is about my relationship with pain, which has been my close companion for about 8 years now. It’s excerpted from something I wrote awhile ago for a relative who who was having painful health issues, to try to help them and their family deal with the ongoing crisis. One of the worst things about pain is how alienating it can be: most people don’t get it; how could they? Another family member, who is also a psychiatrist, recently asked if she could share it with some of her patients, so it’s edited to remove personal info. I hope it can help people.
When I am in pain, I am not rational. Pain distorts and amplifies every minor stress and moderate worry into insurmountable disasters. Thinking about the state of my lawn/inbox/whatever can reduce me to a hysterical frenzy at 4am. The worse the pain, the worse the irrationality. Telling someone who is in pain that they are being irrational is not helpful, though.
Pain makes me feel like I am going crazy. It’s a constant murmur/noise/shrieking in my head that can drown out everything else. It never really goes away, but it can be better or worse. When it’s not bad, it’s like background music; when it’s bad, it’s like being up front near the speakers at a packed, loud concert: I’m jostled around helplessly and feel it thump in my bones. When someone talks to me, I see their lips moving but I can’t hear what they are saying.
When I am in pain, all I want is for it to stop. I will say or do anything to make it stop. If moving makes it hurt, I will say or do anything not to move.
The same way an animal in pain will curl up and ignore everything, or bite out of reflex, I will either lock up and ignore or verbally lash out at my husband. I can’t help it. Pain kicks in adrenaline, and takes the “thinking” part of my brain off-line. The “reflex: fight/flight/freeze” part takes over, the same part that takes over in anger or other strong emotion. I panic. Everything feels like a threat I want to run away from, but the threat is inside and I can’t get away. There are times that I have banged my head repeatedly or pulled my own hair. Watching me be in this much pain is scary for my husband.
Pain is not just a physical thing. It is extremely emotionally traumatizing. When I am in pain, my husband has to be very gentle and speak very softly. If he is agitated, upset or loud, it terrifies me and I go into a panic (see above). When I am in pain, what I need first, MORE THAN ANYTHING is for my husband NOT to problem solve, but to come and gently put his arms around me and tell me he’s there with me and everything will be ok. Usually at first I yell back “No, it won’t be ok!” but after awhile I can calm down. Sometimes when he tries to hug me, I feel claustrophobic and push him away or yell at him; it’s again like being an animal in a trap. He might just hold my hand at first, then hug me. I need that comfort first, even just for a few moments. Physical contact is not just nice and cuddly; it also releases endorphins which alleviate pain and help me relax.
Because I am still in pain and not thinking clearly at this point, now my husband has to problem solve. That usually means getting me a heat pad & helping me position it on my abdomen (otherwise I will just sit there and hold it in my hands like an idiot), a pill and something easy to eat.
Now comes the waiting. The 45 minutes it takes for a pill to kick in seems like HOURS when I am in pain. I often start to panic: Why is it taking so long? What if that pill was a dud? What if it doesn’t work? Sometimes I work myself up so much that by the time the pill does kick in, my body is so tense that the medication doesn’t work as well. So relaxing while waiting, even a little, is important.
I HAVE TO keep my brain/mind engaged and keep those endorphins coming, or I just goes down the pain>panic>tension>more pain spiral. Sitting around in pain doing nothing makes pain WORSE. Sometimes I get so desperate that I get up to do something like the dishes, just so I’m not stuck on the sofa with nothing to do but feel in pain. If movement causes more pain, this is ultimately foolish! So, what to do?
1. Put on some not-too-loud music that lasts at least as long as it takes the pill to kick in. This gives me something to focus on. If it’s an album/mix I know, it also helps me to think: “by the time “Unstoppable” comes on, the pill will have kicked in & I’ll feel better. Only four songs to go!” I also put on music to help me get to sleep if I am in pain. It really helps.
2. Gently pet the dog. It is very calming and the quiet that surrounds animals is relaxing to me.
3. DO SOMETHING! I can never think of anything at the time, and I never think some stupid game could possibly help…but it always does. I have to do something uncomplicated that has a finite result in a short span of time. Small jigsaw puzzles, origami, a coloring book, acting out the bamboo forest scene from “Crouching Tiger, Hidden Dragon” with a bunch of cilantro and a couple of tiny devil ducks. If My husband can sit with me, easy games like Connect-4 or Trouble work too (he has to pop the Pop-O-Matic for me, which is always a little disappointing); sometimes he reads to me. Vague, open-ended things like just drawing don’t work because I have to come up with an idea. If my husband puts a piece of paper & pencil in front of me and says “Draw something” I just freeze up. If he says ”Draw a picture of our dogs in the small appliance section at Target shopping for an ice-cream maker,” that would work. My husband & I also play Dungeons & Dragons because it can last for hours, so if I’m having a bad night I have something else to focus on. TV helps, but only a little. The drugs I take give me headaches & nausea that get worse from the computer or TV. And sometimes it’s just too disorienting and confusing. Some Wii /computer games help too, but again, after awhile the glowing screen is just too much for me.
5. Talk to someone. If it’s late at night and my husband is too exhausted or has to work in the morning & I can’t find an awake friend, I call a crisis hotline. I was embarrassed the first time I called but it they were really nice, and it helped distract me.
When I am in pain, I swing between being brave & stupid by not asking for help, and demanding & childish by being very selfish. There is middle ground but it’s hard to inhabit. Pain makes me feel alone and like my husband does not care about me. I spend a lot of time feeling ashamed of not being able to tough it out, and of having to ask for help. It makes me doubt myself and feel weak. Getting through it requires faith, and not the religious kind (although my experiences the last 8 years have deepened my curiosity about the Great Whatever).
What I mean by faith is, it’s the belief that I will get better, that I can endure. Even when I feel trapped in an endless moment and can’t remember or imagine any other way of being, I have to believe that the pain will ease, it will pass. It’s the faith that although I can’t stop the pain from coming, I don’t have to keep it or own it or find some great meaning in it, I can just let it flow through me like water. It’s knowing that my husband can’t understand what I am going through and will say the wrong thing and act like a dick and walk away when I need him, he is still doing his best and I’m never alone. Even when he is not next to me holding my hand, even when we are not getting along, I am cradled in the home and the life we have made, and that life is real and true and funny and gorgeous. It’s the faith that I’m not alone, the pain will pass and I will still be here.