Dealing with chronic pain puts an undeniable strain on the strongest of relationships. Jan and her husband, Bill, who have known each other since college, have lived through five years of Jan's debilitating back pain, which developed after she learned a new golf swing. Jan's journey for pain relief (she has spent thousands of dollars for treatments including acupuncture, core strengthening sessions, physical therapy, Rolfing, and chiropractic care) has been incredibly hard on this athletic couple and their family.
Here, Jan and Bill open up about how divisive and isolating pain can be and what they do to bridge that divide and stay strong together. Their quotes are taken from an interview with Jan and an interview with Bill. They have been edited and combined to show two sides of one painful story.
What the back pain feels like
Jan: The muscles are grabbing and I can feel them starting to twist. I feel like a pretzel. Every time you take a step it just grabs, like a muscle spasm.
There's something about back pain, how it seizes your nervous system at a certain point. When I have pain in my knee or my shoulder, the pain is local. Back pain takes over your whole body.
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Facing up to a chronic condition
Bill: I think Jan has always been a fairly intense person, but I think she was always pretty happy. I think she began to stress about this about a year and a half in, when we realized it wasn't a temporary thing and we didn't know how to fix it. I think she became more desperate, and I think that's a big thing to take on when you're a full-time mother with three kids and a traveling husband. It made her less happy-go-lucky.
Jan: My uncle, who's a doctor, sent me this article when he heard my back was still bothering me. I swear I started bawling. Basically the article said how difficult this is to diagnose, even for people who are extremely well schooled in medicine. Eventually you have to become your own advocate and solve it.
But I don't want to spend my life on it. My husband doesn't want to spend his life on it. My kids don't want to spend their lives on it. Nobody wants to talk about this 24/7, and it seemed like that's what you'd need to do.
What falls on Bill's shoulders
Bill: There are two aspects, the physical and the emotional. The physical is fairly easy. I mean taking the groceries out of the car, doing stuff with the kids that requires physical stuff. Chores, everything that Jan probably could have done before, fall on me. That part's easy.
Emotionally, that's where the real tough part is. You wish you could do more. You feel helpless. I'm not a doctor. I wish I could do more to help her. But it's frustrating because you feel like you can't. And she can be upset and angry. Her mood swings are pretty big.
The burden and the partnership
Jan: I consider myself lucky because I'm pretty strong. Most people wouldn't have made it. People get divorced over this. People kill themselves over this. I'm lucky. But you know, Bill doesn't want to deal with this and he's the nicest guy in history. But no one can feel your pain.
Bill: It is an overriding subject and topic in our lives. As someone who's in it and cares and loves her, I'm in it all the way, too. The strategy goes back and forth. Sometimes we just say enough is enough and just take a break. No more seeking treatments. Rest and see what happens. But then when she starts to feel emboldened or she starts to hear about something new or different, she'll start to seek a new procedure.
Feeling alone with your pain
Jan: The kids know it's real. I think they feel like I'm the kind of person who wouldn't complain if I had a choice. Bill's the harder one. You say things to your spouse that you wouldn't just say to a friend. I'm not the kind of person that has lunch and pours out my sorrows on friends. I'm fun, that's my release. So who gets to hear it? Bill gets to hear it. So maybe he hears more than he should. Maybe he gets more than his fair share, and the truth is he's not a solver. He's an ignorer. That's just his personality, which makes him great to live with for every other possible problem you could encounter. I don't have anybody to help me. I'm definitely in this alone.
Bill: You want to be there to help and do everything you can, but this feeling of not being able to makes you feel worse. And I think she wants more out of me emotionally and I don't know how to do it a lot of times—besides be the bad guy, take the abuse, and move on.
No one can feel your pain
Health to Bill: If Jan was a 100% before this happened, where do you think she is now?
Bill: It's hard for me to really know. My own feeling, if you ask me today, I would guess she's at 80%. If you asked her she might tell you 50, but I don't know.
Health to Jan: If "normal Jan" was at 100%, where are you now? Do you feel like you're at half-mast?
Jan: Oh no. I'm at 5%.
Distracting the pain away
Health: Bill, what helps Jan?
Bill: Certainly a film project she worked on last spring was great for her on many levels. I think she's better a lot of times when we're away from things—either on vacation or away for the weekend—so that she doesn't have to be in the mix. I don't think there's really much else.
Jan: You find yourself making choices. Everything is a catch-22. You want to do stuff and be active with your kids to distract yourself and then when you're active, you hurt yourself. When you're lying there watching TV because you can't do anything else, that's destructive too, because you're like "I can't do anything."
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What sacrifices would they make to end this pain?
Health: Jan said that if someone could cure her, she would give them your house. Is there any limit to what you would sacrifice to help her?
Bill: I would do whatever Jan's willing to do. I'd be on board.
Health: Do you ever think that you are going to have to change your lives completely because of this?
Bill: Our kids are still young. Our thought is that when Amy goes off to college, there will be some serious discussions about where we're going to go and deal with this. Having said that, if something completely dramatically gets even worse, absolutely we'll have discussions and thoughts about ways to manage this. Nothing is off the table.