Relying on Dr. Google for Too Long
Hindsight is 20/20. And that's definitely the case for me and my husband, Keegan. He was diagnosed 7 years ago with ankylosing spondylitis after 7 years of undiagnosed pain and stiffness. In that time before his diagnosis, I remember spending hours and hours on Google. I'd search "back pain" and "shooting leg pain", which only left us with more questions than answers. Keegan before his diagnosis had sporadic health insurance. This was the time before the Affordable Care Act when we could have found him an insurance plan.
Once we moved in together, I knew things were more serious than just Keegan being tall and underweight. My thoughts moved to darker places--could it be cancer? Those dark thoughts led to my incessant Googling for hours on end. And unfortunately at the time, I worked on healthcare projects so all I could think was the worst. Each nugget of new information felt like an exciting lead--what if this was the cure to all Keegan's problems. This cycle lasted for over 2 years.
Dr. Google told us Keegan had everything except AS
I became a sort of pseudo doctor at that point. I felt confident in my answers. I began referring to his muscles and bones by their scientific terms. I had no idea what I was talking about looking back at that time now. We didn't even have an X-ray or a doctor's physical exam notes. One day in particular I remember wondering if he either had MS or a terrible muscle/ligament pull that never healed. After all, he was working 8-10 hour shifts without a break as a barista.
I came across symptoms for a deep hamstring tear and it sounded like the majority of his symptoms. What if he tore something and it never healed properly? It even potentially described the lower back pain he had. We felt confident in our guess and moved forward with treating it with at-home remedies.
The car trip that changed everything
One weekend we decided spontaneously to drive from Harrisburg, Pennsylvania to Orlando, Florida so Keegan and I could visit Disney World and Universal Studios for a long weekend. It's a 14-hour trip. Keegan's 6'4" and we drove a Toyota Camry. It was an incredibly uncomfortable trip for him. Then came walking around the parks for hours. The first day we were there, I had to get him a wheelchair.
Guilt hit me for hours on that trip home. I'm not a doctor, and I'm not even close to having clinical experience. What was wrong with me? Two weeks after, Keegan and I got married (we were already engaged) and within a month, we were in a doctor's office.
What's the moral of the story?
I forgive myself for the time I spent Googling. It ended up helping me ask better questions at his first rheumatology appointment. But the point is this: anytime I've found myself Googling symptoms for hours I know the situation is beyond my expertise. Google is a great tool, but it's terrible at diagnosing diseases. In the years looking back, I've figured out what Googling is helpful for: education. Once we knew AS caused Keegan's symptoms, I dove into the research, symptoms, causes, and treatments to have better discussions with his doctor. Googling was the way we found some alternative treatments to chronic pain, like yoga and medical marijuana.
So, to any fellow Googlers out there, don't let Google give you answers. Let it inspire questions. There's more information out there than we can ever consume. So be careful, limit yourself, and ask yourself, "Am I actually finding out anything helpful? Or am I just falling down a black hole?"
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