Improving Online Mental Health Self-Help Culture

Online mental health self-help culture has its pros and cons-  most of these are also true of other medical conditions and disabilities- particularly ones that are less well-understood or acknowledged by mainstream health care professionals and institutions. These are some observations I’ve made after long-time participation in autistic adult & neurodiversity communities. Note that I am far more familiar with helping adults with autism & parents of kids with autism than say, people who have bipolar disorder or schizophrenia.

Pros:

* Spread of good information about mental health, self-help techniques, both mainstream & alternative mental health resources

*More access to information & support particularly for people in under-served populations- uninsured, low-income/working-class people, people of color, GLBTQ individuals, folks with disabilities in addition to mental health issues, people in countries or regions that have minimal or non-existent mental health care

*People finding community, sometimes pride in neurodivergent, mad, disabled and queer identities.

*More understanding for family, friends, community members and mental health professionals

*Advice on how to navigate healthcare/social service/education bureaucracies, and less conventional ways of accessing basic needs (barter, sharing, crowd-funding)

*Peer supported/confirmed self-diagnoses for people who might have a harder time accessing formal diagnosis. Sometimes a person later gets an official diagnosis, services and accommodations.

Cons:

*Spread of bad information on mental health, ineffective or inappropriate self-help techniques (either for everyone or for specific individuals) Framing either mainstream or alternative mental health structures/techniques as either 100% good or bad.

*Professionals & family members who are otherwise unaware of the broad range of mental health self-help communities may see more extreme factions and assume they are representative of the whole. But this is a problem with every subculture, internet or otherwise- especially if something is either unfamiliar or someone is already prejudiced against it, they will pick the most extreme version of it, and that’s the part that becomes most well known, even if it’s a small minority. (This is why respectability politics never works!) And if some part of the media gets involved, well St. Dymphna help us!

*False self-diagnoses that lead to a person to engage in self-help and self-medicating that harms them, spreads inaccurate information about a condition to others. (I’d add “uses self-diagnosis as an excuse- but those of us with official diagnoses are so frequently told that “we’re just using X as an excuse, it’s all in your head, not real, that didn’t exist in my day, blah blah” that quite frankly I doubt that many people specifically seek neurodivergent labels for themselves while knowing they are not accurate. Yes, sometimes there are hypochondriacs or maybe even trolls that try to infiltrate communities. But this is not something people seek out to be “cool”.

*Confusion by both participants and outsiders between  identities and subcultures perceived as unusual/eccentric- such as- otherkin, multiple systems, various alternative spiritual beliefs & practices, gender & sexual minorities that *do not* by themselves indicate a person having mental distress issues vs. assuming that if this person claims this identity they must necessarily be mentally ill, add extra stigma helping.

How to we increase positive results of our communities while reducing negative results?

*Self-care and knowing your limits- do what you need to do to take care of yourself, mentally, physically, emotionally and spiritually. If that means taking a break from these communities- both online and in-person support groups, fine!

*Figure out clear boundaries for what you are and aren’t willing to do to help others- a therapist can help with this.

*Get out and be social, hang out with people who are supportive but don’t have mental health/substance abuse issues themselves

*Get lay-level training about how to deal with mental health crisis- both for yourself and others from orgs like National Alliance for the Mentally Ill (NAMI) Note: I know some of my fellow activists don’t care for NAMI- I am just suggesting them as a baseline, you don’t necessarily have to agree with them on everything to learn from them.

*Suggest and redirect people towards groups that focus on resources in their area (I’ve often encountered pleas like “I’m about to become homeless/lose X type of benefits etc” from people without them telling us where in the United States they are, let alone where on the entire frickin’ planet!

*Encourage people to seek out in-person help in their local area, and not wait til things have gotten to an emergency level (or what they perceive as an emergency!)

*Recognize when/if you have a Savior/Martyr/Compulsive Parent Figure Who Must Help/Adopt all the Lost Puppies & Orphans type mentality. Helping people is a wonderful thing! It can also become an addictive and dysfunctional behavior!

*Learn about Minority Stress Theory, and particular issues facing various minority groups that can affect them while accessing mental health care. Learn about different cultural views of mental health

*Share information about how to get professional help, while being understanding of concerns people may have about doing so.

*Moderators of different communities/fora should talk to each other to share information about problematic individuals. Even if some of their behavior is related to their mental health or neurodivergence, that is not an excuse for breaking rules that are clearly stated, being disruptive, or harassing and bullying other people. Hence why, in these communities in particular to clear rules that all participants agree to, and steady & active moderation. Confidentiality is also a must.

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