There are two new articles on pain in the XLH community.
The first is “Qualitative analysis of pain impact in adult patients with XLH.” The conclusions aren’t surprising to patients: “adults with XLH experience chronic pain that affects all aspects of life. Individuals with XLH face challenges when managing their pain due to lack of resources and limited healthcare provider knowledge of the disease.” But it’s important work, laying the foundation for further research to develop a non-pharmaceutical intervention (digital app) to help patients cope with pain.
You can read the full article for free at the link above, and I encourage you to check it out. I think you’ll see yourself in the sample interview quotes by patients!
The second one is “Pain, Quality of Life and Mental Health in Adults With X-Linked Hypophosphatemia: A Cross-Sectional Study.” Only the abstract is available to me, so all I’ve got is the stated results: “Patients with XLH present altered skin but not bone mechanical pressure pain thresholds, which may suggest referred pain through sensitization mechanisms. Questionnaire data highlight significantly higher pain scores in patients with XLH, which correlate with depression scores. Additionally, patients with XLH report decreased quality of life and mental health, increased pain catastrophizing thinking, and anxiety.”
Which leads to another article you might want to read: “Pain Catastrophizing: Controversies, Misconceptions and Future Directions.” I’d never heard of the term before, at least not as applied to the perception of pain, and my first reaction was to shudder. My second reaction was to shout that of course we anticipate worst-cast scenarios relating to pain. It’s not irrational (the implication of “catastrophizing”) to assume the worst when we’ve experienced the worst in the past! Apparently I’m not the only person to have that reaction, and thus the medical community has considered changing the term. The article cited above concludes that it’s not the name that needs to be changed, but the stigma associated with it.
I appreciate the article’s insights, but disagree with the conclusion. Because, seriously, how do you remove stigma from a word that is, in fact, stigmatizing in both lay and medical conversations. The article acknowledges that BOTH clinicians and patients view the term as implying that the patient is exaggerating their pain or the consequences of it, and suggests that the solution is to educate everyone that the term is NOT intended to suggest the patient is somehow to blame for exaggerated anxiety, etc.
The thing is, stigma can’t be fought logically. It’s an emotional reaction, something we’re not even generally aware of feeling. We are, after all, slightly more advanced versions of Pavlov’s dogs, trained by repetition to have certain reactions to certain stimuli, including words. Once clinicians have associated “catastrophizing” with “exaggerating” (which they apparently have), you’re not going to change the association with logic and continuing medical education classes. If we want to have conversations about the nonjudgmental concepts inherent in what’s now called “pain castrophizing,” without constantly battling the knee-jerk stigma reaction, then the concept needs a new name. Even doing that, starting from scratch in a sense, will be difficult, but the sooner we start, the better.
Look at how hard it is to stop clinicians/researchers from thinking of XLH “a form of rickets.” That phrase is scientifically inaccurate and harmful to patients (leading to adults being denied any treatment at all, and kids being denied treatment for any non-bone symptoms), and yet it persists, some fifty years beyond the discovery that it’s a phosphate-wasting disorder. Once a phrase is widely adopted, complete with incorrect or negative connotations, the only way to fix the problem is to kill it dead, replace it with a correct, non-judgmental one, and stigmatize the people who use the old terminology. Yes, it’s hard to do, and it requires a concerted effort to correct those who use the old stigmatizing/misleading language, but until you do, the stigma will remain. And in the context of pain research, patients will continue to be blamed for both their pain and their entirely understandable response to it.
***
Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
If you’d prefer to read this blog as a newsletter, sent straight to your inbox, please sign up here.