The Quest for Certainty
I believe most of us would agree that uncertainty is a familiar feeling. I'm the first one to admit that I can be somewhat irrational when faced with uncertainty. The more prolonged the feeling, the more irrational the behavior becomes. It took being diagnosed with MS for me to see how far uncertainty can truly drive behavior, and not in a positive direction.
Going to great lengths to find certainty
So why do we go to such lengths to find certainty? Well, because that's what the brain does. Our lungs oxygenate us, our liver cleans out blood, our stomach digests food, and our brain keeps us safe. I'm no scientist, but I can confidently say that the brain isn't designed to make us happy but keep us alive. Sometimes, the answer doesn't have to be right; it just has to be.
Living with an unpredictable illness
There are likely a million other reasons we struggle with uncertainty, but most of it seems to boil down to control (or more so the perceived lack of it). Being factless can be debilitating when trying to navigate a life that has been forever (and sometimes painfully) flipped upside down. MS is unpredictable, scary, frustrating, and sometimes ever-changing. Our brain is having a difficult enough time trying to keep us safe through that experience to question the information we read.
If you're anything like me, you have, for lack of answers, gone on a scavenger hunt on the internet. I remember my neuro telling me the same day I received my diagnosis:
"Don't go Googling. It will consume you."
Diving deep into online searches
Let's be honest; when has that ever stopped anyone? I could spend hours going deep into obscure websites, blogs, anecdotal experiences, and forums until I was sure I knew more than my doctor about my disease.
We seek answers even when they're not the right answers
After joining the MS-subreddit, I quickly realized I was far from the only one doing this. And I could immediately see how damaging it was. Remember, when we are uncertain, our brain looks for answers, and if they are right isn't always necessary. In the age of COVID-19, the postings and discussions online around unpublished research are rampant and throw caution out the window. Certainty becomes a life raft, and it's easy to fall prey to its seductive peace of mind or unnecessary freakout. We all want to know "what's next" and "what it all means." Unfortunately, there is rarely an easy answer to these questions, especially with a disease like MS that shows up differently for everyone.
The limitations unpublished, non peer-reviewed research
Several issues surround this "research" behavior, but one thing seems forgotten in this: just because it's "research" doesn't mean it's true. Small sample sizes can't reach conclusions; not being published and peer-reviewed invites mountains of doubt surrounding the findings' validity. What we read online can be sensationalized to gather clicks and ad revenue. But we are chemically rewarded by our brain when we find an answer to our question, and it's our responsibility to put the things we read into perspective.
The real answers may not bring the comfort we seek
It's not our fault: we are just doing what our brains are telling us to do. MS is scary, and the answers are sometimes calming. But we can do a great disservice to ourselves if we do not stay alert and question the validity of the information we read. Staying informed is vital to living the best lives we can with this disease, but with the information overload we get online, we have to make sure we are informed. The sad part of this is that sometimes, the real answers aren't satisfying, and they might invite more doubt and fear. Relying on each other's support here is crucial. By asking the right questions, staying open and alert in our quest for answers, and questioning the validity of the information we receive, we can stop sensationalizing and start listening.
Doing our due diligence when reading about MS news
I will most likely never stop getting that jolt of excitement when I read about "miracle breakthroughs" in research. Unlike before, however, I don't put a lot of weight behind the findings until I have read the complete research, talked to my neuro, and looked at more sources. It's not as satisfying, but it keeps me grounded. I am as flawed as anyone else, and I frequently struggle with keeping a level head when researching this disease, especially online. Uncertainty gets to me, and it never stops being uncomfortable. I will always be curious to know more and keep up to date with the latest information, promising research leads, new treatment options, and community advocacy, and I don't intend to stop. But I intend to speak up when I read sensationalized information, and I hope you will join me in that.
I know this time is lonely and uncertain for so many reasons. I feel it daily. Keep strong, stay informed, and be the best information detective you can be.
Were you misdiagnosed with something else before receiving a MS diagnosis?