It's Complicated

When I first went to my former primary care physician with a long list of symptoms, I was convinced I had long COVID. Later, after doing more research and developing additional symptoms, I began to wonder if peri/post menopause was a more likely explanation. What struck me most, though, was how often different providers tried to simplify everything. It's just depression. It's just menopause. It's just hearing loss. It's just...

One symptom I couldn't make sense of was the tinnitus. I initially thought it had been triggered by an air horn that went off far too close to my ear, and that may well have been the starting point. What I couldn't understand was why it became dramatically worse when I had COVID. I still remember the exact moment it happened. I had gone to bed, and without any movement, sound, or obvious trigger, the ringing suddenly (and dramatically) intensified. It has never gone back to its previous level. When I brought it up with my former PCP, I was told, "It's just hearing loss" and an ENT specialist later told me the same thing. But I believe the explanation is more complicated than that.

Please don't misunderstand me. I know most physicians take their work seriously and genuinely want to help their patients. But when the focus stays on individual symptoms rather than the whole picture, we—as patients—can end up paying the price. More research, paired with a new care team, led me to realize that my tinnitus, along with several other symptoms, had more plausible explanations than the ones I had been given. Even more importantly, many of those explanations overlapped.

Initially, many of my symptoms seemed random and unrelated. But after refusing to be dismissed, continuing to educate myself, and eventually finding thoughtful, curious physicians who were willing to look more broadly, the puzzle pieces began to fall into place:

This chart is a simplified version of my experience, but I wanted to keep it as compact as possible. As a visual person, what stands out to me is how clearly it illustrates why we shouldn't assume any symptom is "just" caused by one thing. Instead, it shows how several different conditions collided to create what felt like a perfect storm inside my body.

It also helps explain why some of my symptoms have been so severe. When the same symptom can be caused—or worsened—by three, four, or even five different underlying issues at the same time, the intensity starts to make much more sense.

When our son was in the hospital, one lesson became abundantly clear: we have to advocate for our own health (or have someone advocate for us if we're unable to). Specialists are highly trained and often incredibly experienced, but no one lives in our bodies except us. If an explanation doesn't quite fit, or something doesn't sound or feel right, ask questions. Seek clarification. Request additional testing when appropriate. Get a second opinion if the diagnosis doesn't make sense.

I also believe it's important to do your own research—but to be thoughtful about where your information comes from. There's a lot of excellent information available online, but there is also a great deal of misinformation. Please choose your sources carefully.

No, I'm not a physician, and I'm not offering medical advice to any of you. I simply hope my experience encourages you to take care of yourself, trust your instincts, advocate for your health, and live your very best life.

Because you're worth it.