The Power of Connection

Depression is more common in people with narcolepsy.¹ According to research, around 20 percent of people diagnosed with narcolepsy also experience depression, with some estimates suggesting the prevalence could be as high as 57 percent.^1,2

It’s unknown if depression is a primary feature of narcolepsy, or if life is just harder managing the condition.¹ It’s also been suggested this increased prevalence could be a result of the significant overlap in symptoms, including fatigue, disruptions in sleep, negative effects on cognitive performance and attention span, weight gain, and social withdrawal.² (See Table.)

For those living with chronic conditions, the importance of mental health heightens. Prioritizing and integrating mental health with existing treatment plans sets patients up for success and can lead to better overall well-being.

Why Peer Support Matters

When it comes to a disorder that is so misunderstood and that has such a large impact on mental health, having others to relate to is crucial. Support groups are a vital tool in helping individuals transition from isolation to connection, and can play an important role in addressing mental health issues along with cognitive behavioral therapy and medication, if necessary.

Merriam Webster defines a support group as “a group of people with common experiences and concerns who provide emotional and moral support for one another.” The purpose of these groups can vary but ultimately revolves around providing a safe space for attendees to share their experiences and connect with each other.

The groups can be in-person or online, peer-led or professionally facilitated. They usually focus on a specific topic that attendees have in common and require support with.

According to a 2022 study on the benefits and challenges of established peer support programs, they “offer informational and psychosocial support, reduce social isolation, and connect patients and caregivers to others with similar health issues.”³ By meeting with others who have been through similar experiences, individuals can learn about how to navigate certain obstacles they may face in their journey from those who have already been through it.

Peer support has been shown to improve quality of life, increase engagement with services, enhance whole health and self-management, and decrease the severity and frequency of depression, anxiety, stress, and other mental health challenges.⁴

These benefits extend beyond the individual. Support groups can help caregivers, siblings, or partners who may not know how to navigate their loved one’s condition while also taking care of themselves, or another child.

WUN Support Groups

Wake Up Narcolepsy (WUN) offers online support groups for those living with narcolepsy, idiopathic hypersomnia, and their loved ones through a secure platform called HeyPeers. The company’s mission is to help more people improve their lives by leveraging innovative technology and evidence-based peer support programs.⁴

HeyPeers published a white paper on the effectiveness of video-based peer support groups based on responses from 310 survey participants who attended peer support groups for depression. An analysis of their responses indicated that peer support group participation reduced severity of depression and decreased urgent care visits for depression, bipolar, or anxiety by 48 percent, emergency room visits for depression by 50 percent, and hospitalizations for depression by 69 percent.⁵

For people living with narcolepsy—a chronic, lifelong disorder that’s misunderstood and underdiagnosed and that overlaps with depression in many ways—connecting with others who share their experiences is incredibly important. By providing online support groups through HeyPeers, WUN makes these options available at no cost to individuals across the globe.

These support groups are one of WUN’s most popular programs, and are only possible because of the dedication of the volunteer facilitators. With nine different options, people can find the group that fits their schedule or focuses on the topic they need support with. Each group has a HeyPeers professional and at least one facilitator who has a personal connection to narcolepsy. Consistent check-ins with understanding individuals, led by professionals and peers, have a profound impact.

In addition, in-person support groups are held each year at WUN’s National Summit. Attendees are divided into groups based on their relationship to narcolepsy (patients, loved ones, teens) so everyone is surrounded by people who understand. These meetings often run over time as participants are deeply engaged in the conversations. It’s one of the most important parts of the event and a major draw for attendees.

There are limitations to support groups. There may always be more to talk about than time allows. Some participants may seek advice that others are not equipped to give, or there may be disagreements on how to handle certain aspects of their condition. It’s important to keep discussions focused on support, not providing definitive answers. Attendees should feel they have space to share but not at the expense of others.

Choosing the right support group doesn’t have to be difficult. WUN encourages people to start with any group, as there is no wrong place to begin. While one person may find it helpful to meet with other loved ones, another may find it more beneficial to meet with those actually living with the disorder. They don’t have to choose just one group, and they don’t have to commit to attending every week.

Living with narcolepsy can feel isolating, but support groups remind participants they are not alone. By sharing experiences, offering encouragement, and learning from one another, individuals with narcolepsy can gain confidence in managing their condition.  Navigating narcolepsy is about so much more than treating the physical symptoms. When we encourage those living with this condition to prioritize their mental well-being alongside their physical wellness, the result can be quite powerful.

Cara Weaver is the manager of public relations and communications at Wake Up Narcolepsy and is also a person with narcolepsy type 2.

By Cara Weaver

Source: SleepWorld Magazine March/April 2025

References

1. Wake Up Narcolepsy Brown Bag Webinar. Narcolepsy 101 with Thomas Scammell, MD. YouTube. Published February 8, 2024. Accessed February 28, 2025. https://www.youtube.com/watch?v=DRsw6KEYtM4
2. Morse AM, Sanjeev K. Narcolepsy and psychiatric disorders: comorbidities or shared pathophysiology? Med Sci. 2018; 6(1):16. doi: 10.3390/medsci6010016.
3. Joo JH, Bone L, Forte J, Kirley E, Lynch T, Aboumatar H. The benefits and challenges of established peer support programmes for patients, informal caregivers, and healthcare providers. Fam Pract. 2022;39(5):903-12. doi: 10.1093/fampra/cmac004.
4. HeyPeers. About HeyPeers. Accessed February 28, 2025. https://heypeers.com/about.
5. Caimano VF. The effectiveness of video-based peer support groups. HeyPeers. October 2015. Available at: https://heypeers-resources.s3-us-west-2.amazonaws.com/pdf_documents/white-paper.pdf. Accessed February 28, 2025.

Table. Comparison of symptoms of narcolepsy and depression.

Table courtesy of: Morse AM, Sanjeev K. Narcolepsy and psychiatric disorders: comorbidities or shared pathophysiology? Med Sci. 2018; 6(1):16. doi: 10.3390/medsci6010016.