A Guide for the Distressed: Internet Spaces for Education and Support

Etti Calderon

The Importance of Community

The world can be wide, strange, and unfriendly, but the internet can bring people together and help them understand each other. The meeting spaces made possible by the internet are particularly beneficial to those who suffer from emotional and psychological distress caused by depression, obsessive-compulsive disorder (OCD), and eating disorders. These groups often have trouble finding help to cope with their disorders and meeting others with shared experiences. Access to mental health professionals can be limited by physical location, finances, and mobility. These difficulties become even more insurmountable when they are misunderstood by “mainstream” society, leading to stigmatization, marginalization, and unwarranted shame. The web is open to all with internet access, and it is easy to remain anonymous when necessary. The flexibility and candor that this allows makes the internet an ideal — if virtual — accessible space for associations and social media groups to build communities. In these spaces, people with shared experiences can learn about each other and themselves, and advocate for acceptance and understanding by society at large.

 

A Few Good Sites

There are many such websites and online communities, but I have chosen a few to illustrate their usefulness. The three websites that I will discuss do not all provide the same services, but they all have the shared goal of improving communication and

providing education to those suffering from disorders, and to others who are interested in learning more about them.

The National Eating Disorders Association (NEDA), the International OCD Foundation (IOCDF), and the Anxiety and Depression Association of America (ADAA) are valuable spaces for achieving these goals by providing direct access to advice and education for people struggling with anxiety and depression. These organizations also offer help to their families, friends, and allies.

The organizations are all run by professionals in the field but sustained and supported by users with personal experience with the disorders in question. These associations advocate for services, research, and treatment. They work to cut through bureaucracy to ease the process for those looking to get help, and to find the support that they need. Through these efforts, online associations can provide people affected by these disorders with the resources needed to cope with their disorders while empowering them to improve their lives.Don't forget

Within these online communities, those affected by the same disorders can learn about their diagnoses and gain the ability to express themselves, so that others can understand their experiences as well. This helps to reduce feelings of marginalization and to “normalize” the experience of mental illness and similar struggles. These groups work to destigmatize these disorders by demystifying them, ridding them of the sense of taboo and “otherness” that is created by the use of euphemisms and a general avoidance of discussing mental illness.

How They Help

As stated on its website, the NEDA “raises awareness, builds communities of support and recovery, funds research, and puts life-saving resources into the hands of those in need.” They do this by offering diagnostic tools and direct help through phone, instant message, and text message helplines. They also facilitate access to personalized care by providing an advanced search tool that individualizes treatment recommendations based on specific eating disorders, gender, age, co-occurring psychological issues (such as substance abuse and trauma), the level of care needed, payment options, and types of therapies offered. The NEDA has a page with guidelines for the media, to help journalists sensitively and accurately report on eating disorders, including explanations on why certain terminology is harmful.

The IOCDF writes that they work to “increase access to effective treatment, end the stigma associated with mental health issues, and foster a community for those affected by OCD and the professionals who treat them.” They work to achieve these goals by providing resources and support, promoting awareness, providing education to mental health professionals, and “supporting research into the causes and treatments for OCD and related disorders.”

Similarly, the ADAA writes that their association is “dedicated to the prevention, treatment, and cure of anxiety, depression, OCD, PTSD, and co-occurring disorders through education, practice, and research.” The association provides resources and community for professionals in the field and the public, including those suffering from anxiety and depression, and their families and friends as well. These resources include multi-media educational content, support communities, and a directory of therapists.

In addition to web pages on the definition of different eating disorders, symptoms, and prevention, the NEDA also focuses on reassessing body image to help visitors to the site improve their relationships with their bodies and create healthy perceptions and expectations. The attractive website has bright colors, modern aesthetics, and integration with social media, making it friendly and familiar to teenagers.

Pages on identity focus on the incidence and particularities of eating disorders within specific religious and LGBTQ+ communities. According to the page on eating disorders in the Jewish community, “Reluctance to acknowledge an eating disorder is impacted by the stigma of mental illness in Orthodox Jewish communities, as well as the importance of being thin for marriage arrangements among the ultra-Orthodox.” The article also suggests that eating disorders are used as coping methods for those seeking control in the Jewish Orthodox community, “because it is perceived as more ‘socially acceptable’ than other behaviors such as drug abuse.” To help doctors assist patients who face the restrictions of kashrut on top of eating disorders, the NEDA page includes links to resources specific to this demographic. By discussing specific groups of people – including some that are already marginalized – NEDA provides a space for people in each community to feel heard, be recognized, and feel validated in their particular struggles.

Resources

The IOCDF provides educational materials on OCD and related disorders, including resources and advice for family members, a list of relevant literature, and a directory of support groups. The IOCDF also provides databases of local affiliates, including various service providers and clinic types, support groups, and types of care. The website also includes a blog with articles on living with, speaking about, and finding treatment for OCD. Other anxiety disorders can co-occur or be confused with OCD, so the IOCDF site also provides comprehensive descriptions of Body Dysmorphic Disorder and other related disorders.

These associations also make it possible for users to share their own stories. The IOCDF has a blog where the site’s editors publish one story a week. They also have a newsletter, to which they “accept submissions in the form of stories, poems, and research articles (by professionals).” Users can also connect with each other on the organization’s Facebook and Twitter pages. In addition to chat and phone helplines, the NEDA offers moderated forums and social media channels. Similarly, the ADAA has a page on Health Unlocked, another great social media resource where the NEDA and IOCDF also have built communities. Health Unlocked writes that their goals are to “connect people with the same health conditions, where they can share experiences and get answers to questions about their chronic conditions and well-being needs ‑ empowering people with knowledge for enhanced self-care.” This site includes communities for people with all sorts of health concerns, all moderated by professional and knowledgeable bodies such as the ADAA. The ADAA describes their page on the site as “a community [that] is a safe space for those affected by anxiety and depression to talk to others who truly understand.” Health Unlocked allows users to post anonymously.

Taking the first step

The most difficult part of any psychological therapy and treatment is often the first step – reaching out for help. These websites make it easy for their visitors to understand their symptoms, learn how to discuss them, and reach out for help in a private, inclusive environment where caregivers and community members are knowledgeable and non-judgmental.

When looking for help online, be sure that the sites you find are run by professionals in the field. Websites ending in “.org” are often trustworthy, but it is a good idea to take some time reviewing the site to be sure that it speaks to you. Some people prefer the more casual environments found in social media groups. A quick search on Facebook for specific issues can help you find such a community. The ADAA provides a comprehensive list of international organizations for education and support with anxiety disorders and a wide range of mental health issues for those diagnosed with specific disorders and for anyone looking to understand the world and receive some compassion in return.

Got everything?

 

%d bloggers like this: