When I was first diagnosed with Chronic Lyme Disease, it was almost a relief. After over a year of struggling with nearly debilitating symptoms, seeing doctor after doctor, and hearing that there was “nothing wrong with me,” finally having a name for what was happening felt like a strange kind of victory. It wasn’t the kind of victory anyone wants to win, but at least it was something real. It wasn’t in my head. And believe me, for a while, I really wondered if it was.

But here’s the thing about Lyme Disease: it’s more common than we think, and the reality of it is far more complicated than most people—including many doctors—understand. It’s a disease that affects the body in multiple ways: fatigue, joint pain, brain fog, digestive issues, and much more. And it’s especially tricky because it can go undiagnosed for years, hidden under the radar, while wreaking havoc on your body. I’m not the only one who struggled with getting diagnosed—countless others have the same experience, many of whom have struggled much longer. And even now, it’s still widely misunderstood.

What Exactly Is Chronic Lyme Disease?

So, what’s going on with Chronic Lyme? It’s caused by a bacteria called Borrelia burgdorferi. Yes, I had to look that up, and no, I still have no idea how to pronounce it. This bacteria is most commonly spread through a tick bite, but here’s something—many experts now believe Lyme can also be transmitted by other insects, like mosquitoes. Who knew?! Ticks don’t have to be your only concern anymore.

Lyme Disease, when it’s chronic, can be a multi-symptom illness that impacts your brain, your joints, your organs, and your entire system. Symptoms can range from severe fatigue and joint pain to memory problems and digestive issues. It’s not just about feeling “tired” or “achy” sometimes—it can be completely disabling. The brain fog alone can make you feel like you’re trying to function while underwater.

Why Is Lyme Disease So Hard to Diagnose?

One of the biggest struggles with Chronic Lyme is getting a diagnosis in the first place. Lyme can be tricky—it doesn’t always show up in typical tests, and the symptoms often mimic those of other conditions. Doctors sometimes see a patient with fatigue, joint pain, and brain fog and think it’s something else entirely—like stress, depression, or anxiety. And I get it. It’s easier to label it as “all in your head” when there isn’t a clear sign, right? But that’s where the issue lies: without the right tests or a doctor who’s familiar with Lyme, it can be easily missed.

It doesn’t help that Lyme Disease can stay dormant in the body for years, silently waiting for the right moment to make its presence known. For many people, there’s no noticeable bite or initial symptom—just an unexpected, random onset of illness. One day you’re fine, and the next, you’re stuck in a fog, fighting symptoms that feel like they came out of nowhere.

I personally went through months of doctor visits, tests, ER trips, and even treatments that didn’t make a dent in my symptoms. Antibiotics were prescribed, but they weren’t specifically for Lyme—they were for what we thought was a different issue. The antibiotics didn’t work, and the symptoms didn’t go away. That was the moment I knew something was very wrong.

The Growing Recognition of Lyme Disease

The good news is that Chronic Lyme Disease is starting to get more attention. One of the most encouraging things for me is seeing people in positions of power, like RFK Jr., speak out about Lyme. He was recently appointed as Secretary of Health and Human Services (HHS), and he’s been vocal about his own struggles with Lyme, as well as the challenges his children have faced due to the disease. One of his children even became temporarily paralyzed from it. When he said, “No one will fight as hard as I will against Lyme disease,” I couldn’t help but feel a renewed sense of hope. Finally, someone with power is fighting for this cause—and not just talking about it, but living it.

This kind of recognition is long overdue, and it’s incredibly encouraging for those of us dealing with Lyme. As the awareness grows, more research is being done, and hopefully, more accurate diagnoses will follow. I know that it’s a slow process, but seeing people like RFK Jr. stand up for Lyme Disease feels like a victory. It brings hope that one day we won’t be ignored or dismissed when we speak about our struggles.

After my diagnosis, I started hearing about more and more people who were struggling with Lyme or had been for years. And what struck me was how many people had no idea they were even at risk. Lyme is a lot more widespread than we think. Minnesota, for example, has one of the highest concentrations of Lyme-infected ticks in the country, and yet so many people had never even considered it as a possibility for their own health issues.

Why Lyme Can Stay Hidden for So Long

It’s also becoming clear that Lyme doesn’t always follow a “normal” infection pattern. It doesn’t always show immediate symptoms. Experts believe that Lyme can go completely undetected in the body for years, only to become active later when something triggers it. That means the bacteria can remain dormant, hiding in tissues until suddenly, out of nowhere, you’re hit with a wave of symptoms. It can be incredibly frustrating to have your health turn upside down without any warning. And that’s part of what makes Lyme so dangerous—it doesn’t play by the typical rules.

Where Do We Go From Here?

So, what’s next? The future looks brighter for those of us living with Chronic Lyme. More people are speaking up, more research is being done, and there’s finally some recognition at the highest levels of government. But for those of us who have lived through this journey, we know it’s still a long road. The good news is that we’re not alone, and there’s a growing community of people who understand what we’re going through.

Even though I’m still on my healing journey, knowing that the world is beginning to listen to Lyme warriors like us is encouraging. There’s hope in the progress, and the more people speak out, the more change we can bring about. Remember, the Lord sees us and is advocating on our behalf— He is bringing forth experts in this field ready to fight against this disease. If you or someone you love is struggling with Lyme, know that you’re not crazy, and you’re definitely not alone. There’s hope for answers, for treatment, and for healing—just keep fighting. It may take time, but the fight is worth it.

Remember, Faith Over Fatigue