As I read it, I found myself nodding in agreement. As a sufferer of chronic pain, I recognized every.single.thing. he mentions. Not only do the symptoms match, but the ways in which I deal with them and the ways in which I want people to respond are dead-on.
I shared it on Facebook and put it onto my Pinterest, hoping it would help the friends who have asked, "what do I do?" "how can I help?" Those same people, with the best intentions, sometimes do things that make me want to scream in frustration and run away. It's not that I blame people for responding the wrong way, but I think it may be time to realize the importance of learning how to respond - and actually implementing that knowledge into actions - properly. Because even though there is no culpability in it, there is an incorrect way to respond.
The title of the article could be off-putting, however. I'm not married, so I am not directing it at a particular individual. I didn't put it up for future reference; I put it up for now. In light of this, I've decided to take his share some of his tips here, adding caveats that make it more generally applicable to friends and family. So without further ado...
"I think that it is important to think of pain as your common enemy, not as a part of your wife or baggage that comes with her. It is something outside of both of you that impacts both of you and that can kill your marriage."
Yes. This isn't applicable only to marriages. Chronic pain puts strain on all relationships. And when you're suffering from pain, you don't want to be put in the box of problems. You want to be able to face the pain with the people you love. Collaborate, don't lecture.
"If your wife is anything like mine, she will try to hide her pain from you. She does it for two reasons: one, she does not want to be a wuss or a whiner. Second, she knows that her in pain is distressing for those that she loves, so she hides it from us."
Yes. Yes. YES. This is 100% true. I have been accused of being a hypochondriac, imagining the pain, or a baby about it. And that hurts emotionally. From the fear of that emotional pain, I avoid reacting or acknowledging my physical pain. You need to look for it. Learn signs and signals. In my case, I either get crazy hyper and flippant, or really quiet and sullen. Extremes in either direction are warning of a problem. If you notice that I'm in pain and you say something about it, prepare to fight with me a little bit. I know that my pain will hurt you if you love me, so I will need you to be earnest and insistent.You don't need to say something every time you notice. Just learn to notice and when to say something...
"Because women in chronic pain have to be good at ignoring their own pain, their maximum sneaks up on them and on you. Trust me when I say that you do not want to be surprised by your wife’s pain. The wall of pain will hit her hard, and if you are lucky she will end up snapping at your or the kids. If you are unlucky, she will collapse into sobs that will break your heart to hear. Before I learned to read the signs in my wife, it would seem like her breaking point would come out of nowhere. We tried to get her to tell us when she was coming up on her limit, but she only notices about 30 percent of the time, and that is after years of coaching and encouraging."
This is why you need to learn how to read the signs of extreme pain. The downward spiral has an ugly bottom. This is where noticing my pain is important. If it's normal, everyday, manageable pain, that isn't dangerous territory. But when I have an additional injury, am sleep deprived, or have had a recent physical trauma, the pain can get out of control easily. Even the "normal" pain can sneak up on me and become unmanageable quite suddenly.
"When you note the non-verbal clues of increased pain, reflect them back to her. Ask that she put her pain on a scale from 1-10, but make note if she tends to tip to one side of the scale. My wife has had a C-section without anesthesia, so that is her 10. She rated a compound broken bone where I could see a jagged bone tip protruding through the skin of her ankle as a five. So know how she rates things. When you determine that she is in rising pain, encourage her to move towards a place where she can rest and take medication. Remind her how much the pain storm will cost her. If it is worth it for her to continue, then so be it. Do what you can to support her."
First, I have to say wow. A C-section without anesthesia? I can't even imagine. This woman has undergone horrendous amounts of pain. But the principle applies - when you're in constant pain, your pain scale is dramatically shifted from the normal one. Personally, since I'm always in some pain, everything through the "3" on a pain scale in the doctor office is negated to a zero. The rest is scaled accordingly. I don't think I'd ever use a 10... except in the case of an anesthesia-free surgery. That can have a 10.
To the second point, again, I have to heartily agree. Sometimes I don't notice the pain increasing. It can sneak up on me. If the people around me are able to pick up on my non-verbal cues and bring them to my attention, it can help me keep the pain at a manageable level. Once it runs away with me, it's hard to stop it.
"Chronic pain does not mean that the person has the same level of pain every day or even at various times in the day. So encourage her to put the fun stuff first. If she has enough energy and pain relief to do a quick trip out and about, encourage her to go someplace fun rather than the grocery store."
Yep. Sometimes we save our energy for what we view as our responsibility and are too burnt out to do anything fun. Ever. Encourage some fun. Assure us it's allowed.
Don’t let her “should” on herself—beat herself up for what she cannot do. Argue back when she expresses guilt or sets impossible expectations for herself. When my wife tells me that she is a bad mother because she couldn’t stand in the rain beside a soccer field, I remind her of all the other ways that she has been there for our kids. Encourage her to tell significant people in her life such as her boss and co-worker that her life is significantly impacted by pain. Remind her that stating the truth is not the same as complaining and it does not make her a whiner.
I will fight you if you say this. I will fight you tooth and nail. I don't want to complain or do anything that could be perceived as complaining. Affirmation from the people who love me cannot be overvalued.
"One of my early ways of dealing with my wife’s chronic pain was to encourage my wife not to do things that caused her pain. Then I realized that if she avoided all activities that caused her pain, she would never do anything. Let her grit her teeth and get through pain for things that are important to her, even if it kills you to watch her do it."
If I can do it safely, without causing permanent damage and ruining my health, let me do it. If I didn't do anything that hurt, I wouldn't get up in the morning. Heck, I wouldn't get in bed. It all hurts. Just because there's pain doesn't mean it's bad for me. Let me have some fun, please.
"Women in chronic pain are used to working through pain, distracting themselves, minimizing etc. They play mind games that help them get around it. But this means that they pay less attention to their bodies than other women do. In my wife’s case, it makes her really really clumsy. I used to try to help her by saying things like “Your toes and nose should be pointed in the same direction as the location you are placing an object like a glass.” That really isn’t helpful. We have compromised: for things my wife knows are important to me, like lifting and carrying food, (I love her cooking and when it gets spilled all over the kitchen floor, I am in pain) she agrees as a favor to me to allow me to do those things. And, I keep plenty of Band-aids, ice packs and other things for the rest."
I am a klutz. I had never attributed my klutziness to my pain, but upon reflection, it makes sense. In support of this theory, I have noticed that I get more clumsy after I hurt myself. I'm not as aware of my body as a matter of survival or "quality of life." It may be frustrating to watch, but it's part of the reality of the situation.
"The key thing to remember is that pain builds even while you are managing to ignore it. The longer your wife is in pain, the more of it she experiences and the less she can block it out. So what would be an objective level 5 pain your wife can block out to make it a level 2. But when she is no longer able to block it, it will come back as 6-8. Beware of this whiplash phenomenon."
When the pain comes back, it comes back with a vengeance. There isn't much you can do about this, but if there's a sudden swing in mood, this is probably the cause. The pain can suddenly go from "under control" to "hitting me hard and burying me." This is normal. Just be as supportive as you can be and help me get it back under control. Help me to breathe and relax. Help me get more comfortable. Distract me.
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I don't want my pain to rule my life. Even more than that, I don't want my pain to rule your life. All of these things are ways in which we can make it better... for both of us.
1 comment:
Thanks for the FANTASTIC post! This information is really good and thanks a ton for sharing it :-)
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