Lately, I’ve noticed a strange trend happening in several online ALS communities I belong to. I’ve seen an increase in posts from people who haven’t yet been diagnosed with ALS asking members of the group to essentially offer medical opinions.
A typical post begins with a list of physical symptoms, followed by a statement that their doctor doesn’t think they have ALS, then a question such as, “So, what do you think I have?”
Second opinions are important. Especially when they involve serious health conditions such as ALS. But in my book, social media doesn’t qualify as a quality source for a second opinion. I shake my head in disbelief and wonder what they are thinking.
But maybe there are reasons behind their desperate queries.
A combination of pressures
Perhaps the pandemic experience, with its lockdowns and Zoom calls, has lulled us into familiarity with online “experts.” The explosion of health webinars, videos, and other social media content has provided a soapbox for all to voice an opinion. It’s enough to come down with a good case of information overload.
Then there’s the long process of getting a final diagnosis, since ALS has no definitive test. Instead, patients endure what feels like endless scans, exams, and procedures just to rule out everything else before ending up with ALS.
Finally, I also think it’s a lot of plain old worry. Our imaginations are kidnapped by negative thought loops. We dwell on worst-case scenarios and follow online rabbit holes in the guise of wanting to “research our condition.”
Get used to waiting
I wish I could tell these not-yet-diagnosed folks that once they’re diagnosed, no bells start ringing and no sirens go off. They won’t be rushed to the nearest hospital for an emergency procedure or enrolled in a physical therapy “rehab and recover” program. Their doctor will most likely tell them to go home and wait.
Living with ALS means waiting for symptoms to progress or a new batch to show up. With only two treatments for ALS — and those only help to slow down symptom progression — we’re vulnerable to still more worry and concern.
I avoid getting pulled into giving medical advice and always urge people to seek out a medical professional. I also recommend folks create a trusted circle of care, which would include people they know rather than people they met via social media. Trusted people could include one’s doctor, an ALS Association care coordinator, and family members.
Another recommendation is to start adding healthy habits into daily life, including good sleep, quality nutrition, gentle exercise, and relaxing the mind and body. These will immediately help to regain control over needless worry, and later, they’ll help if a diagnosis is received. I give credit to these healthy habits for helping me to successfully live with ALS for the past 11 years.
Finally, limit online activities, pick one trusted news source to follow, and sign up for their newsletter. I suggest ALS News Today.
Asking strangers for their opinions about healthcare decisions is risky.
If you or someone you know is struggling with anxious, negative thinking, try my suggestions. Let’s learn to live well while we live with ALS