Narcolepsy patients all over the world are struggling with a negative self-image because of their sleeping disorder. Narcolepsy symptoms, Cataplexy especially, are not commonly viewed in positive or educational lights. Most patients who struggle with the signs and symptoms of the disorder are embarrassed by their unique medical situation, and they often remain isolated because of this self-consciousness. More and more narcoleptics are seeking out the structure and comfort of Narcolepsy support groups to help them cope with their emotional and personal troubles. In fact, some might say that Narcolepsy and support groups were made for each other.
What is a Support Group?
In the simplest terms, a support group is a gathering of people who have a common interest. While the personalities and lifestyles of all group members may be completely different, one cause brings them together. Most support groups focus on one clear topic: breast cancer, aids, and addiction to name a few examples.
Support groups make it possible for people who are dealing with similar problems in their lives are able to come together, and form a relationship with one another to help them cope with their struggle (receive Narcolepsy help). Most support groups offer a forum for people with a connection to come and openly share their feelings as well as gain information. Medical, emotional, and physical issues can have extremely negative effects on your quality of life; it may be helpful to seek support and empathy from other people who understand your issues. Support groups are also a good opportunity for patients to learn what supporting people with Narcolepsy really means.
The Two Main Types of Narcolepsy Support Groups
There are two main categories in which support groups are placed.
Self-Help Support Groups
Self-help groups are also commonly referred to as peer support groups, fellowships, mutual aid self-help groups, lay organizations, and mutual help groups. Self-help groups are run entirely by the members of the group; the members organize and execute all decisions affecting the group. Most self-help groups consist of numerous volunteers that all express a passion or experience in the cause. Members of self-help groups are free to explore discussion and other therapies at their own pace, in their own way; the members are helping themselves cope with Narcolepsy.
Professionally Operated Support Groups
When support groups are managed by people who do not share the same problem as the members of the group, the support group is called a professionally operated support group. Professionally operated support groups delegate a facilitator that will be in charge of all group discussions and activities. Unlike the free-form, emotional exploration that is offered through self-help groups, professionally operated groups provide a strict structure and regiment for patients who struggle with commitment. Social workers, clergy members, and therapists are all facilitators for professionally operated support groups. The most commonly recognizable forms of professionally operated support groups are hospitals, jails, prisons, and rehabilitation facilities for drug-treatment; professionally operated support systems are commonly located in institutional places.
What are the Benefits of Attending a Narcolepsy Support Group?
- Finding a place to fit in: Many narcoleptic patients find their disorder much easier to handle, physically as well as emotionally, after finding a home with a support group. Narcoleptics often feel isolated and alone; a very small percentage of Americans suffer from the disorder. Finding a Narcolepsy support group that feels safe and comfortable is a great way to assist you, and even those closest to you, with becoming accustomed to living with the problematic disorder.
- Gain confidence and self-empowerment: Narcolepsy patients, especially in their adolescent teenage years, often experience embarrassment and shame because of their disorder. Patients with Cataplexy tend to be especially reserved or introverted. Participating in a support group will you see that there are many other people in the world you understand what you’re going through, even if that number seems really small sometimes. Accepting the commonality of the problem will help educate others on the truth behind Narcolepsy; it is an unfortunate, but manageable sleeping disorder.
- Gaining a forum in which to speak openly:
- Giving and receiving advice: Freshly diagnosed Narcolepsy patients usually experience a period of confusion and stress following the diagnosis. Support groups offer the option of seeking interpersonal contact. New Narcolepsy patients and old Narcolepsy patients are able to come together and swap stories and advice about their disorder; yet another forum for Narcolepsy education.
- Reviewing treatments, doctors, etc.: At a Narcolepsy support group, the patients are able to come together and share their own personal reviews and opinions of all-things Narcolepsy. Meeting with your support group gives you all the opportunity to talk about any new treatments, facilities, doctors, etc. that could be helpful. Personal reviews are one of the most reliable, consistent ways to chose a trusted medical professional or treatment
- Developing new skills: Support groups, especially professionally operated support groups, help members develop new skills for dealing with their Narcolepsy symptoms and complications. Members are able to hone the skills that will help them successfully manage Narcolepsy in the presence of trained professionals that are always ready to lend a hand.
- Strengthening relationship skills: Because support groups bring together various strangers for intimate conversation, a certain level of respect and integrity is required while conversing as a group. Narcoleptics are often moody or easily irritated, and may benefit from the structured behavioral requirements. Improving listening and empathizing skills in support groups will help improve relationship skills outside of the group.
How Can I Find an Appropriate Support Group for Narcolepsy?
If you decide you would like to explore the possibilities of joining a Narcolepsy support group, there are many avenues to travel when making your decision. Before you make a hasty decision, do plenty of research. Just like internet chat rooms, not all support groups can be trusted.
- Talk to your doctor: More often than not, your doctor will be able to suggest a support group that fits your needs.
- Visit a sleep center: If your doctor is unable to refer you to an acceptable group, take a trip to the closest sleep center in your area.
- Contact medical facilities in your community: All towns are not created equal, and you won’t find a respectable sleep clinic twenty miles. If you are having trouble finding a sleep center close-by, ask specialists at your local medical facilities.
- Look in the phone book: In the technological age, many people forget about phone books, but they still contain useful information.
Other Ways to Find the Right Narcolepsy Support Group
- Visit local universities
- Talk to other Narcolepsy victims
- Search the internet