Just the other day I was reflecting on my adult life and shared with my husband that it’s hard for me to even remember what it feels like to be truly healthy.
As a child, I was generally healthy and active, but always struggled with anxiety and allergies. By age eighteen, I had developed Temporomandibular joint dysfunction (TMJ), headaches, multiple chemical sensitivities, and polycystic ovarian syndrome (PCOS). Then came a severe bout with the Epstein-Barr Virus in college, followed by chronic fatigue, brain fog, and depression. And by the time my kids were born ten years ago, things spiraled downward quickly. The digestive issues, weight loss, weakened immune system, unrelenting muscle pain and spasms, and numbness and tingling on one side of my body were enough to render me very sick, very scared, and desperate for answers.
Now, at the age of 36, I am well acquainted with chronic pain and suffering. I am well acquainted with trying to explain a chronic illness to friends and family when I don’t “look” sick. I am well acquainted with cancelling plans and missing out on fun times with those I love. I am well acquainted with the constant battle between what I want to do and what my body will allow me to do….but one thing I am no longer acquainted with is the not knowing. After many months of bouncing from doctor to doctor, most of whom were puzzled or could only offer me a lecture about needing to eat more or just see a psychiatrist, I finally got a diagnosis. It was Lyme disease.
Before my diagnosis, I had learned about chronic Lyme disease and how difficult it was to treat. But surprisingly, the moment I got the phone call that my results were positive for Lyme, I felt overwhelming relief. When you don’t have answers, you feel helpless and hopeless. You often feel alone and dismissed. But once you have a diagnosis, you can finally move from helpless and hopeless to empowered and encouraged. You feel validated. You can make a plan. Find the best doctors. Start the healing process. I am grateful that the months of searching for answers didn’t turn into years like it does for so many others waiting on a diagnosis. I had so much to be thankful for in that moment.
After my diagnosis, many emotions followed and so did the questions. Knowing what was wrong was a huge relief but certainly opened up a whole new can of worms, so to speak. How long would it take to get better? Would I ever feel healthy again? Can I afford the best treatments? What treatment approach would I take? And so many more.
It hasn’t been easy. I can’t say that I would describe myself as vibrantly healthy….yet. But I’m improving one day at a time. And my life has been transformed in many ways because of my illness.
My perspective on health has changed. I now take ownership of my own health because the process of fighting for a diagnosis and then hearing it’s a hard-to-treat condition is actually empowering in many ways. It taught me advocate for myself and to become an active participant in my healing process, instead of relying solely on someone else to “fix me.” My healthcare providers and I are a team.
My experience even led me to a new career. While searching for answers on how to heal my body, I became passionate about nutrition and went back to school to earn a Master’s degree in integrative nutrition. I now get to be part of that healthcare team for others who are struggling – and I do so with more empathy and compassion than I would’ve had if it wasn’t for my illness. And while I understand now that my diagnosis was only the beginning of a long, hard journey, I am forever grateful for that moment because the suffering was far worse when it was shrouded in mystery.
Knowledge is power. And if you’re still among those fighting for a diagnosis, don’t give up. I am living proof that if you look in the right places, there are doctors out there who will fight for it too.
For even more information on Lyme disease and its treatment options, read our Lyme Disease 101.