What age is EDS usually diagnosed?

If you are lucky enough to have been diagnosed relatively quickly, your options are few and limited. A lot of medical professionals have never (or only briefly) heard of EDS/POTS, as EDS/POTS is a very rare disorder. Even if they have heard about it, they still misunderstand it (e.g., thinking that EDS/POTS can’t cause daily pain). 

Furthermore, unless the symptoms of EDS present themselves in a strikingly obvious way, I believe that countless cases of EDS and POTS go undiagnosed and will continue to go undiagnosed—both by patients themselves and their physicians. There are milder forms of EDS and POTS that we frequently encounter in practice. These patients may exhibit symptoms, but they are often too subtle or atypical to be readily linked to a definitive diagnosis.

In my view, the classification of EDS exists in a gray area, as the condition manifests uniquely in each individual. Far too often, patients with unmistakable signs of EDS share stories of doctors refusing to make a diagnosis because their presentation doesn’t conform perfectly to a specific category. Some estimates suggest that up to 90% of individuals with connective tissue disorders may remain undiagnosed.

The opioid crisis has caused a significant shift in the medical field, leading to increased scrutiny of doctors who prescribe pain medications. In some cases, this has even resulted in physicians losing their licenses. Consequently, there is now a heightened level of caution, and chronic, severe pain without clear physical evidence is often met with doubt. Unfortunately, one of the unintended consequences of this shift is that patients with invisible illnesses frequently face suspicion and skepticism when seeking care.

Related readings: 

• At what age does EDS usually start?
• Why is EDS controversial?