My tips for joining and getting the most out of an online ALS group

Over the past six years, I’ve welcomed over 2,000 people to the ALS News Today Forums. It’s one of my many duties as a forums co-moderator. The other things I do include being alert for spammers, adding interesting topics to spark group discussions, and answering members’ questions. Although a high number have joined, only a small percentage are truly active. I write that off to human nature, something I’ve learned a lot about while co-moderating the site.

I’ll also admit that I’m envious of these new people who join and the online opportunities they have today to learn more about ALS, connect, and exchange helpful information. When I was told I had ALS back in 2010, the internet was still evolving and social media was in its infancy. There were no online forums, groups, or chat rooms. I was the only person with ALS in our small community, and even though I attended a monthly in-person ALS support group, I longed to meet up with other patients like me during the rest of the month.

Fast forward to today and the selection of ALS-focused online groups, forums, and websites can be overwhelming. So I understand why some patients and caregivers join a group, drop out, join another, and finally stop trying. To help the undecided and disconnected, I have a few tips to help find the online group that’s a perfect fit for you.

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Are you a patient, caregiver, family member, or interested friend? It matters because some groups are specific. Finding yourself in the wrong group delays getting the answers you’re looking for.

Speaking of answers, are you more interested in learning more about the disease or wanting to connect with others like you? Social media groups like these on Facebook are notorious for passing along medical misinformation. Instead, choose reputable sites such as ALS News Today or Your ALS Guide.

If you’re just looking to be social, Facebook might work for you. However, I will add in an unabashed plug for our forums, which can be described as “having a seat at the adults’ table.” We have no distractions, random photos, ads, lost message threads, or spammers. Our conversations are civil, and topics are easy to locate and follow.

Test the fit

Instead of quickly joining 10 groups, pick one or two and observe what members are posting. If you feel comfortable, stay. If not, move on.

An important part of your testing phase is to participate in a few discussions, ask questions, and introduce yourself to other members. Resist the urge to share all the details leading up to your diagnosis. I remember being consumed by the sheer number of tests, screens, and exams necessary for my diagnosis — and I told everyone who would listen. Later, I learned that almost all ALS patients experienced the same thing. So, when you’re introducing yourself to the group, stick to where you live, what you do, and what your hobbies are. You know, the social stuff.

One big no-no in my book is asking the group for a medical opinion. No “what do you think?” questions. Asking the group to weigh in about your rash, PEG tube that came undone, or bottle of expired medication can put your health at risk. Remember, even though you’ve been spending time together in online chats, these are complete strangers.

It’s OK to ask for bathroom remodeling tips or the best shoes to wear with ankle-foot orthotics. Save your medical questions for your doctor.

Besides co-moderating the forums, I’m also a member of a few online groups. I’ve learned that ALS exists almost everywhere in the world — and although we all have a different journey with ALS, we share the same fears, anxiety, and worries about the disease.

Use my tips to help you enjoy the people you meet online and get the information you need. We need you. Let’s help each other learn to live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.