Regarding Taylor Swift, she may have asymptomatic hypermobility however she also has some of hEDS/HSD comorbidities… ASD( gifted, some OCDs,( watch her movie),eating disorder at one time.
There’s been asymptomatic athletes that end up having something trigger the EDS gene then they become symptomatic. Hypermobility should be a red flag even if asymptomatic. One should investigate for the possibility of it being from a HCTD so they could be mindful of it and be proactive.
Hi Cortney, I admire your work and appreciate your advocacy, but I think it is harmful to patients to use hypermobile and benign in the same sentence.
While it is true that not all hypermobile people are ill, we know that many are, in fact, very ill and have had their symptoms dismissed--for years, and even decades--by misinformed medical professionals who failed to connect these patients' myriad health problems with their hypermobility.
The truth is, there is so much that we simply don't know about these people/patients, because it is so grievously underdiagnosed. I read recently an estimate that 80% of hEDS patients are undiagnosed, and I have seen figures even higher. We may very well learn eventually that most/all patients with complex chronic illnesses including ME/CFS, fibromyalgia, and long COVID (just to name a few) meet diagnostic criteria for connective tissue disorders; we can already see strong signals for those associations.
I suspect we will ultimately find a bimodal distribution in overall "healthiness" of people with heritable connective tissue disorders: some being models of fitness and remaining remarkably healthy even into old age, and others clustering around the other end of the spectrum, having multiple chronic illnesses and degraded quality of life beginning in younger years. Such a distribution would still not necessarily imply hypermobility being benign. There are multiple paths to such a distribution, including that those at the "extra healthy" end of the spectrum have certain protective factors that compensate for the errors in their connective tissues.
Concerns about health anxiety are overblown in my experience, and they are often punitively wielded against patients, especially women and minorities; they have resulted in paternalistic norms in medicine that deny patients knowledge about their own bodies. Knowledge is power, and knowledge that one has risk factors for serious health complications enables patients to take preventive measures and also to be better advocates for themselves when problems do arise. So many of us have been denied that knowledge and the agency to prevent harm to our bodies, and we've been traumatized by the inability of our clinicians to recognize our hypermobility as pathologic.
I believe your message has value, but I hope you'll consider reframing the article, perhaps toward questions of whether all hypermobile people are doomed to be sick (NO!) and directing people toward preventive interventions.
Thanks for sharing this! I tried to be intentional in using “bendy” and benign in the title but throughout the rest using the terminology of asymptomatic. While its absolutely true that there are a lot of undiagnosed patients and getting answers with hEDS can take decades - its also true that up to 30% of the general population in some regions are hypermobile and completely healthy. Genetically/biologically I find this very fascinating- how does this differ from those with symptoms and systemic comorbidities? Im planning to do a series on this so there will be more to come- I will absolutely keep your comments in mind!
I do appreciate the distinction! But I also wonder (again, because we know so little about this portion of the population in the context of their bendiness) if these bendy but “asymptomatic” folks are the part of the population that has migraine, allergies, endometriosis, frequent UTIs, joint replacements, or what have you. Perhaps they are the former athletes who gave up their sports due to frequent injury and now maintain the appearance of good health by restricting their activity.
It’s possible they are the people who might describe themselves as asymptomatic and healthy, but when you drill down, you find that they do have nagging health concerns that perhaps aren’t severe enough to be disabling but that do fit the overall patterns seen in the “symptomatic” bendy population.
And, of course, the characterization of symptomatic or asymptomatic may be fluid, too; someone who has miserable hay fever may appear and consider themselves “healthy as a horse” during all but perhaps a few weeks in September. I personally believed I was healthy until my body refused to play along anymore, and I’ve had difficulty reckoning with the realization that I’ve actually been sick most of my life.
Even beyond that, environmental influences, exposures, and events can trigger significant health declines in sometimes unexpected ways. Are bendy people at higher risk for health destabilization?
I think it’s really important in science communication to be just as clear about what we don’t know as what we do—even though the juicy and exciting parts are the discoveries. Medicine—at least as currently practiced in the US—is really lousy at this; ambiguities don’t fit well into diagnostic algorithms or insurance reimbursement requirements. I would like to encourage anyone writing about conditions that are under-studied and frequently dismissed (and which typically require patients to do a lot sleuthing to figure out on their own) to take extra care to highlight what isn’t known so that their writings don’t become yet another invalidating encounter in the journey of patients seeking answers.
I appreciate the thoughtful dialogue with you on this!
Regarding Taylor Swift, she may have asymptomatic hypermobility however she also has some of hEDS/HSD comorbidities… ASD( gifted, some OCDs,( watch her movie),eating disorder at one time.
There’s been asymptomatic athletes that end up having something trigger the EDS gene then they become symptomatic. Hypermobility should be a red flag even if asymptomatic. One should investigate for the possibility of it being from a HCTD so they could be mindful of it and be proactive.
Hi Cortney, I admire your work and appreciate your advocacy, but I think it is harmful to patients to use hypermobile and benign in the same sentence.
While it is true that not all hypermobile people are ill, we know that many are, in fact, very ill and have had their symptoms dismissed--for years, and even decades--by misinformed medical professionals who failed to connect these patients' myriad health problems with their hypermobility.
The truth is, there is so much that we simply don't know about these people/patients, because it is so grievously underdiagnosed. I read recently an estimate that 80% of hEDS patients are undiagnosed, and I have seen figures even higher. We may very well learn eventually that most/all patients with complex chronic illnesses including ME/CFS, fibromyalgia, and long COVID (just to name a few) meet diagnostic criteria for connective tissue disorders; we can already see strong signals for those associations.
I suspect we will ultimately find a bimodal distribution in overall "healthiness" of people with heritable connective tissue disorders: some being models of fitness and remaining remarkably healthy even into old age, and others clustering around the other end of the spectrum, having multiple chronic illnesses and degraded quality of life beginning in younger years. Such a distribution would still not necessarily imply hypermobility being benign. There are multiple paths to such a distribution, including that those at the "extra healthy" end of the spectrum have certain protective factors that compensate for the errors in their connective tissues.
Concerns about health anxiety are overblown in my experience, and they are often punitively wielded against patients, especially women and minorities; they have resulted in paternalistic norms in medicine that deny patients knowledge about their own bodies. Knowledge is power, and knowledge that one has risk factors for serious health complications enables patients to take preventive measures and also to be better advocates for themselves when problems do arise. So many of us have been denied that knowledge and the agency to prevent harm to our bodies, and we've been traumatized by the inability of our clinicians to recognize our hypermobility as pathologic.
I believe your message has value, but I hope you'll consider reframing the article, perhaps toward questions of whether all hypermobile people are doomed to be sick (NO!) and directing people toward preventive interventions.
Thanks for sharing this! I tried to be intentional in using “bendy” and benign in the title but throughout the rest using the terminology of asymptomatic. While its absolutely true that there are a lot of undiagnosed patients and getting answers with hEDS can take decades - its also true that up to 30% of the general population in some regions are hypermobile and completely healthy. Genetically/biologically I find this very fascinating- how does this differ from those with symptoms and systemic comorbidities? Im planning to do a series on this so there will be more to come- I will absolutely keep your comments in mind!
I do appreciate the distinction! But I also wonder (again, because we know so little about this portion of the population in the context of their bendiness) if these bendy but “asymptomatic” folks are the part of the population that has migraine, allergies, endometriosis, frequent UTIs, joint replacements, or what have you. Perhaps they are the former athletes who gave up their sports due to frequent injury and now maintain the appearance of good health by restricting their activity.
It’s possible they are the people who might describe themselves as asymptomatic and healthy, but when you drill down, you find that they do have nagging health concerns that perhaps aren’t severe enough to be disabling but that do fit the overall patterns seen in the “symptomatic” bendy population.
And, of course, the characterization of symptomatic or asymptomatic may be fluid, too; someone who has miserable hay fever may appear and consider themselves “healthy as a horse” during all but perhaps a few weeks in September. I personally believed I was healthy until my body refused to play along anymore, and I’ve had difficulty reckoning with the realization that I’ve actually been sick most of my life.
Even beyond that, environmental influences, exposures, and events can trigger significant health declines in sometimes unexpected ways. Are bendy people at higher risk for health destabilization?
I think it’s really important in science communication to be just as clear about what we don’t know as what we do—even though the juicy and exciting parts are the discoveries. Medicine—at least as currently practiced in the US—is really lousy at this; ambiguities don’t fit well into diagnostic algorithms or insurance reimbursement requirements. I would like to encourage anyone writing about conditions that are under-studied and frequently dismissed (and which typically require patients to do a lot sleuthing to figure out on their own) to take extra care to highlight what isn’t known so that their writings don’t become yet another invalidating encounter in the journey of patients seeking answers.
I appreciate the thoughtful dialogue with you on this!