Living with narcolepsy can be mentally and emotionally challenging. You may feel overwhelmed or frustrated dealing with your symptoms, like excessive daytime sleepiness, cataplexy, or insomnia. You may also feel isolated if you don’t know anyone else with your condition. Luckily, there are ways to meet with those who understand what you’re going through.
Online support groups offer people with narcolepsy the chance to connect, share stories, give and get support, and talk with others who understand the ups and downs of life with the condition. While there are different types of support groups (including in-person meetings), some people prefer the ease and accessibility of forums, social networks, and other online support groups.
“It’s those who don’t understand what we go through who tend to mistreat us,” one MyNarcolepsyTeam member wrote. “I’ve been through it, too. Thankfully, we’re NOT alone in this! That’s why this website exists, where we can share our experiences and know that others here understand!”
“We’re here to support one another. Reach out when you need to,” another member added.
“Find people who support you, and don’t try to force people who just won’t understand,” advised another member on the topic. “Just know that you’re not alone, you’ve got this, and this community has honestly been great for support.”
“Sometimes I feel like this, but with the support, I always get through whatever I need to get through,” a MyNarcolepsyTeam member added.
Narcolepsy support groups and resources come in different sizes, structures, and formats. Some support options, like MyNarcolepsyTeam, are social networks that are “live” at any hour of any day. Other support options, like group meetings, offer structure with scheduled, appointed times for in-person and virtual meetings.
The type of support group right for you will depend on your needs and preferences. Some people with narcolepsy find that they enjoy using more than one type of support resource or that they benefit from a combination of online and in-person support.
In-person support groups offer structured meetings scheduled at the same time (or times) each week. These meetings are generally led by a health care professional or patient education specialist. They may focus on a specific demographic, such as teenagers or young adults with narcolepsy, or a specific topic, like managing symptoms and emotional wellness.
Some hospitals and health care organizations offer support groups (online and/or in-person) for those with narcolepsy. The search tool on the Narcolepsy Network website allows you to find such support groups and others near you. Another option is the website Meetup, which hosts several in-person narcolepsy support groups in different geographic areas.
Online narcolepsy support resources come in many different forms. Some foundations, like the Narcolepsy Network, use social networks such as Facebook as one means of offering support. That organization and others, as well as unaffiliated, independent groups, host forums, chats, and message boards specifically for those with narcolepsy. Some of these are private groups, wherein posts are accessible only by members. Conversation topics on these sites, pages, and channels range from daily life and “small victories” to questions about medications, symptoms, and new treatments.
There are many benefits to seeking online support when living with narcolepsy. For many people, sharing the challenges of everyday life with narcolepsy with others who understand is a vital — and even daily — coping tool.
Online groups for conditions like narcolepsy provide a valuable form of emotional support — not everyone receives the support they need from their doctors, family, or friends. What’s more, many people living with narcolepsy experience depression. And such depression is one of a long list of already challenging symptoms, like cataplexy, sleep attacks, sleep paralysis, and hallucinations.
Discussing personal concerns with others gives you the chance to forge genuine connections and find compassion and reassurance from those who understand what you’re going through. It may also feel easier to open up to others on the internet rather than in real life.
One MyNarcolepsyTeam member shared their thoughts about the network’s bolstering ways: “I haven’t been on here much. I know I need to be. I definitely need the support and understanding. I miss my old self that was positive, happy, and ‘normalish.’ I figured I could vent here, and people would actually understand — not think I’m being whiny or complicated.”
Online support networks, virtual support groups, and other online communication options are cost-effective. The majority of online support networks are free to join, and members can participate from home or wherever they have a device and connectivity. These two aspects can reduce potential financial and accessibility barriers.
Online support networks also offer a great deal of flexibility. Members of MyNarcolepsyTeam, for instance, have access to their teams 24 hours a day, seven days a week. Online support groups also allow those without physical meetings in their area to find the support they need. As one member wrote, “I’m so thankful for finally having a group of people to share with and learn new ways to deal with narcolepsy. Over the years, I’ve looked for support groups in my area, but there were none to be found. I look forward to ‘meeting’ you all.”
Many people with narcolepsy, especially those who are newly diagnosed, have questions. While your doctor can often answer many of these questions and concerns, it can help to hear from others who have had firsthand experience living with narcolepsy. Members of MyNarcolepsyTeam, for instance, often ask each other very specific questions about daily life, symptoms, and the side effects of different medications.
Many support sites like MyNarcolepsyTeam also have medically reviewed resources that can educate members on different aspects of their condition, including its symptoms, causes, and treatments. These educational resources can help those living with narcolepsy — as well as their loved ones or caregivers — better understand the condition.
Living with narcolepsy can be isolating — especially if you don’t know anyone else with your condition. At times, you may feel that even you don’t understand exactly what is going on with your own body. As one member wrote, “I have to be honest, I didn’t understand this problem and why I have it. I didn't understand it, and I felt very alone. I had no one to talk to about it. It’s good to know now I do.”
Not everyone in your life will fully understand what you are going through. But sharing your experiences, questions, and concerns with others who understand the ins and outs of narcolepsy can be a great source of empowerment and support. Members of MyNarcolepsyTeam are able to discuss their symptoms, treatment plans, side effects, and anything else they experience while living with narcolepsy.
You can find more information about online support groups from your neurologist, through your hospital system, or from organizations such as the Narcolepsy Network. You can also find resources by searching within social networks like Facebook and Twitter, and with any browser’s search engine, too.
When seeking support options, you might also consider broadening your search to include groups for people with other forms of sleep disorders, like sleep apnea.
Online social media support networks and virtual support groups are not replacements for medical advice from your neurologist or other health care professionals. Do not alter your narcolepsy treatment plan or start new remedies (even those that are natural) without first consulting your doctor.
Meeting new people online can be nerve-wracking. You might have hesitations about sharing personal issues with strangers. However, over a period of time, you can become more comfortable and form bonds with others. To gain the most out of your experience, take your time and find an online community that is specifically a good fit for you.
On MyNarcolepsyTeam, the social network and support system for those living with narcolepsy and their loved ones, more than 8,000 members from around the world come together to ask questions, offer advice, and meet others who understand daily life with this sleep disorder.
Have you tried any other online support groups for narcolepsy? Share your experience in the comments below, or by posting on MyNarcolepsyTeam.