Over the years, I’ve shared bits and pieces about my journey with chronic illness, but today I want to lay it all out on the line; I want to tell you my story. I’ve written this post a handful of times over the past year but could never get myself to follow through. I’ve always felt God really tugging on my heart to share my story, but I never knew where to begin. However, if there’s anything I’ve learned, it’s that sometimes He just wants us to take the first step and trust Him with the rest. So, this is me stepping, and trusting His faithfulness in sharing the really messy parts of my story, because I know everything is purposed.
I‘ve battled chronic illness with debilitating, life changing symptoms for 10 years now, and other health complications since I was 3 years old. There came a point when I thought things couldn’t possibly get any worse, but they did. In 2012, I had ACL reconstruction surgery due to a knee injury. The surgery sent my body completely over the edge it had been teetering on. My body became so weak that most days I could hardly even lift my head without feeling like I was blacking out. I felt sick 24/7 without any relief and had to completely rely on others to perform my basic, daily tasks. The only times I left my house were for doctor appointments and I had to use a wheelchair to get around. It’s challenging to describe the severity of sickness I felt for so long, but I wouldn’t wish it on my worst enemy. The long-awaited diagnosis eventually came. I have a chronic illness called Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) that developed because of a genetic disorder called Mitochondrial Disease. I waited so long for an answer and I thought this would finally mean freedom. I didn’t realize it was only the beginning. I thought I had already been through the hardest parts. I thought healing would be the easy part. I quickly learned that illness doesn’t leave you with just itself to recover from, there’s much more to it. My body and mind had been in a constant state of stress for so long that I developed PTSD, along with depression and anxiety that controlled every fiber of my being. There’s honestly no other word to describe those years other than traumatizing.
Trauma, of any kind, tests you in ways you would never imagine. Every day is a battle of choosing whether to give up or keep fighting. I wish I could say that I never wanted to give up. I wish I could sound more courageous and say I never reached a point where I said, “I can’t do this anymore.” But I did. Several times. I felt worthless and without purpose. I felt defined by illness and fear.
Illness and fear are also invisible. I would often hear, “But you look so healthy!” Or, my personal favorite, “Everyone gets anxious sometimes, it’s all in your head.” For the most part, I looked completely normal and healthy on the outside, which made it very difficult for people to understand. It was difficult to understand for myself. Although the intentions of these comments were meant for good, they only exemplified my struggle and made me feel even more isolated. However, I learned not to fall victim to the words and judgments of those who simply didn’t understand. I knew my pain was real and valid and nothing nor no one could take that away. No one is ever going to understand exactly what you’re going through, and that’s ok. This has been a powerful lesson that still serves me well today.
4 years later and I’m still recovering. I’ve learned that healing is not a quick or linear process. Rather, there are many, many layers to the process. I would even go as far as saying that healing has been more of a battle than the illnesses. But at some point I reached the beginning of the other side. The side where hope, peace, healing and freedom live. The side where you find out you have a choice to let the fire consume and define you or strengthen and refine you. You begin to see the world differently than you did before. You realize what truly matters and what doesn’t. You judge a little less and have a little more gratitude.
I’ve had to face my fears head on in order to heal and let go of every ounce of control I ever thought I had. Parts of me are healing faster than others, but that’s taught me to linger in His grace and steadfast love. I have to do a lot of things differently than others, at my own pace, and I used to fight this. When I stopped fighting the need to feel and be like everyone else, I found freedom. I accepted that the only acceptance that matters is His. Everything changed when I surrendered. I surrendered to His process and plans, the good and the bad, knowing that it’s all purposed for my good and His glory. I learned to welcome the suffering and love my journey because if it somehow is bringing glory to His kingdom, there’s nothing else I’d rather do. Little did I know that God was using this trial to completely redirect my life path and change me from the inside out.
I picked up a camera at some point during this time after developing an interest in photography from helping a family friend at a shoot one day. I’ve always had a creative side, so I thought it would be fun, and also a nice distraction. What started as a hobby eventually turned into a business. I was told at a very young age that I would never be able to have a job that puts too much stress on my body. One doctor specifically told me that I’d never be able to do anything that required standing and being on my feet for long periods of time. For a long time, that controlled me in ways I didn’t realize. Shortly after I started my business in 2014, I was asked to do weddings, and I would say no to every single one of them, out of fear. If you’re unfamiliar with the job description of a wedding photographer, it requires you going nonstop for 8+ hours while remaining calm under pressure in front of a lot of people and always being one step ahead. After a lot of encouragement from my family and friends (who all deserve a post dedicated just to their never-ending support and for never giving up on me) I finally said yes. I’ll never forget the conversation I had with God the night before I photographed my first wedding. I was up all night, sick to my stomach, and trying to figure out how I was going to do it. I said, “God, I can’t do this.” I was reminded I didn’t have to rely on my own strength. So, I took Him at His word, and you know what? I thrived. That day will forever mark a before and after period in my life because it’s the day I started acting out of faith instead of fear. The impossible happens when you silence everything but His voice and be obedient to what He’s calling you to do.
As I’m sitting down to (finally) finish writing this, I just got home from my second wedding in two weeks, and I’m getting ready for another one this week. I don’t understand His ways and I don’t think I ever will, but I know our God is faithful. I look back and see His hand on it all. He’s proved His faithfulness to me time and time again. That is what keeps me going even when I don’t know where I’m going or how I’m going to get there. We don’t always have to know why, we just have to know Who.
Left: 2012, sick, weak & smiling through the pain | Right: 2018, healthy, strong & genuinely happy
**A fellow chronic illness warrior and blogger, Sara Panther, just made an excellent video called, “13 Things People with Chronic Invisible Illness Want You to Know” that I highly suggest watching!**