BY: Dr. Jennifer Crane, PT, DPT, OCS, ATC (she/her)
Many folks within the EDS/HSD community identify as disabled and feel VERY strongly against person-first language.
Though person-first language is meant to promote respect, the concept is based on the idea that disability is something negative/ undesirable. Alternately, identity-first language conveys a disability as being a permanent and important part of a person’s identity. Identity-first language is based on the social model of disability, which states that though impairments are limiting, it is actually the inaccessibility of society that is disabling. But please – If in doubt, ask how they prefer to be described! If you’d like more information on this topic, this blog post discusses more nuances between using person versus identity first language.
The Zebra is the EDS/HSD mascot & is often how EDS-ers will refer to themselves or their community. This comes from the quote ‘when you hear the sound of hooves, think horses, not zebras.’ The ‘zebra’ represents a rare disease; and in this case, has been adopted by the EDS community. So – If your patient has known about their hypermobility for some time, refer to them as a zebra for instant buy-in.
Spoons & spoon theory: This is another common term used within the EDS and chronic illness communities. Spoon theory is a way to illustrate the energy limitations that can result from living with a chronic illness. Using spoons as a unit of energy, spoon theory estimates how many spoons individual tasks require. It also helps people coping with chronic illnesses visualize their total daily energy. Together, the calculations become a benchmark for pacing and prioritization strategies. People with chronic health conditions often self-identify as “spoonies.” HOWEVER, although you can call your patient a Zebra, you should NOT call your patient a spoonie…that’s reserved exclusively for them! Use spoon theory when discussing the patient’s HEP as related to energy optimization.
Fragility narratives: When referring to the ways in which healthcare providers communicate with their patients; a fragility narrative is a way of describing a person’s injury, symptoms, or prognosis that emphasizes their vulnerability and limitations rather than their
strengths and potential for recovery. Fragility narratives are often used as explanations to their experience of pain or injury and is VERY disempowering. If your patient has had their diagnosis for a longer period of time, they have almost certainly been subject to this narrative by other healthcare professionals. Be proactively aware of this, as you will likely need to spend a LOT of time helping them re-write this narrative.
Finally, I will leave you with one important reminder: flexibility, like all other components of fitness, can be trained. Not every patient with beyond “normal” flexibility is hypermobile or has a hypermobility disorder. To illustrate my point, none of the following artists have hypermobility disorders:
…while both of these artists have diagnosed hEDS with multi-system involvement:
Join Dr. Jennifer Crane, PT, DPT, OCS, ATC for April’s Functional Dry Needling Lunch & Learn, happening Tuesday, April 25th from 12:00 – 1:00 PM CT, Register Now!