Participating in Support Groups as a Person With Idiopathic Hypersomnia
Advice for Living With a Hypersomnia From People Who Have Hypersomnias*
Advice for Living With a Hypersomnia From People Who Have Hypersomnias*
While there are several online support groups specifically for PWIH (person(s) with idiopathic hypersomnia), there may be fewer in-person support groups (which may also meet via video platforms such as Zoom). However, there may be groups within the broader hypersomnia community that are open to PWIH, such as groups for people with narcolepsy (N1 or N2). A typical narcolepsy support group may include people who have N1, N2, and some people with IH and other hypersomnias, such as KLS or circadian rhythm disorders.
Question:
How can PWIH feel comfortable attending a support group that is not intended for PWIH?
These questions and considerations may also apply to participating in a support group specifically for PWIH. Because there can be a wide range of severity and symptoms, an individual PWIH’s symptoms may be in the minority.
*Members of the Hypersomnia Foundation Patient Advisory and Advocacy Council (PAAC) who either have a hypersomnia or are supporters offer this advice (2020).