Participating in Support Groups as a Person With Idiopathic Hypersomnia

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?

  • Every group is different, and every PWIH has their own unique symptoms. There is no “one size fits all” answer, but the following considerations may be of help:
    • What are the expectations of PWIH when considering or attending a support group?
    • Often, the main common denominators between IH and other hypersomnias are excessive daytime sleepiness (EDS) and non-restorative sleep, or medication concerns. Might there be other common denominators that will help the PWIH be comfortable in a group?
    • What expectations or concerns does a PWIH have about the group’s reception to hearing and learning about IH?

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).


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