One thing that came through loud and clear in the survey I recently conducted is that people who have SIJD are tired of being misdirected and misunderstood. That’s why I think that those of us who have a stake in the SIJD conversation are going to have to start paying more attention to semantics.
If you’re wondering what I mean by that, you already get it. Semantics is “the meaning, or an interpretation of the meaning, of a word, sign, sentence, etc.”
Quite simply, the meaning you attach to a word or an idea may be completely different than the meaning that I attach to it. For that reason, we tend to get tangled up in unnecessary disputes and going down pointless rabbit trails. When that happens, the dialog is rarely constructive.
- Many of us have had family members, friends, doctors or other healthcare practitioners tell us that the pain is all in our heads (i.e. that we’re making it up for some inane reason—to get a better insurance settlement, because we’re lazy, or simply to get attention, for example.)
- And then someone comes along and says, “the pain is all in your head.” What they mean is that pain originates in the brain, not that you don’t have real, excruciating physical symptoms. Dr. John Sarno has written many books about psychosomatic illness, and it took me awhile to understand that he wasn’t saying that I didn’t have legitimate pain. He was saying that our brains are more involved in the pain process than we think they are.
And so, if someone in group #2 says, “Pain is all in your head” to a person who’s repeatedly encountered people in group #1, they immediately get defensive and sometimes combative, because they think you are discounting their experience. You can’t really hear what someone’s saying when you’re busy fighting what you think they’re saying. Maybe, just maybe, if people in group #2 could somehow acknowledge that a person with SIJD might be attaching a different meaning to what they’re saying, perhaps they might find a much more receptive audience.
Here’s another semantic problem: the blanket term “back pain.” More often than not, when I talk about my experience with back pain, people immediately assume I have a herniated disc. And if you’ve ever known someone who has a herniated disc, you know it’s not something you can easily hide. I’ve never had a herniated disc (though I do have four that are bulging) but I know plenty of unfortunate souls who’ve suffered through them. From what I can tell, having a herniated disc is like having a Rottweiler digging its fangs in your spine and keeping them there, 24/7. Having SIJD is like having a dog digging its fangs into various places in your low back, butt, hip or leg, but it’s intermittent. You never know what you’re going to wake up with. Sometimes it’s a Rottweiler and sometimes it’s a Chihuahua. On some days the dogs sink their teeth into you consistently, all day long, in all different places. But sometimes they sleep most of the day. And when they do wake up and bite you, it doesn’t break the skin.
I bring this up because I’ve often felt like I have to justify my illness to people who question the validity of my pain. Just because I’m not hobbling, bent over, crying or gasping in agony doesn’t mean that my pain isn’t legit. Herniated discs are easier to detect than SIJD. They’re also more widely accepted within the medical community and beyond. For those reasons, the general population usually associates “back pain” with disc herniation. And when you don’t present as someone who has a herniated disc, sometimes people question if you’re really in pain or not, because “herniated disc” is the only back pain language they speak. I’m not sure there’s much that can be done about that, besides us doing our part to educate others about our particular “back problems.” I guess what I’m saying is that it’s nobody’s fault, it’s just what is. I can’t speak for anyone else, but in my own life it’s been discouraging and frustrating for me to try and clear up the misunderstanding. It’s easier to hide.
Finally, I have a request. Can we please stop talking in absolutes? One of the most frustrating things I see is people making always/never statements about SIJD treatment. For example:
“Physical therapy works.”
Well, it didn’t solve my problem, and I tried three long stints with three different therapists over the years. So when you tell me unequivocally that it absolutely positively is the answer for my pain, what I hear is, “You didn’t try hard enough” or “You haven’t found the right therapist.” What you might really be saying is, “Physical Therapy is the one and only answer for some people,” or “Physical therapy is a vital part of a person’s overall recovery, whether it be post injury or post op.” I believe in physical therapy, and will probably go back to PT now that I’ve had my surgery. But PT alone didn’t cure me of my SIJD problems. Oh how I wish it had.
I’ve also heard people say, “You’re crazy if you fuse your SI joint.” I think sometimes what they mean is that you’re crazy if you go straight to surgery without trying other less invasive, non-surgical solutions first. And I agree with that. You owe it to yourself to fully invest in the non-surgical treatments for SIJD before you decide to have surgery. Surgery isn’t the end-all-be-all answer anymore than physical therapy is. Truth is, both surgery and physical therapy have made all the difference for some of the people. But neither of them has made all the difference for all of the people. Everyone’s history, anatomy, comorbidities, and circumstances are different. So what works for me may not work for you (and vice versa.) This is true for all the other SIJD therapies too: RFA, chiropractic, somatics, acupuncture, etc.
And even when we talk about the various surgical techniques, I think we need to be careful making blanket judgments about specific procedures. I’ve seen people who’ve never had the surgery say that iFuse is bad. Really? Tell that to the hundreds, even thousands of people whose lives have been changed for the better by the iFuse surgery. When you say it’s not legit, you’re discounting the experiences of those who’ve gotten their lives back because of it. Yes, some haven’t fared so well, but there are a myriad of reasons the surgery could’ve failed them. That doesn’t warrant dismissing the procedure altogether. We’ve got to stop with the inflammatory rhetoric. If surgery is warranted, each person must do their own diligence to find the procedure that will be best for them. Because I don’t know what’s best for anyone but me. And even that’s debatable.
So how about we try and eliminate the “all” or “never” statements? Diagnosing and treating SIJD isn’t that simple, and declaring that one treatment is the only path toward healing isn’t just inaccurate; it’s unkind. Even if that’s not what you intended, it probably wouldn’t hurt to pause and think about how what you’re saying might mean something entirely different to someone else. Because God knows we could all use a little more encouragement and understanding.
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