It’s a tricky thing to let people watch any portion of our journey. They do watch. And they judge. But the rare few support and love on you. Then maybe, someone is helped, or changed, or inspired, or feels less alone because you’ve decided to share the gift of suffering. I’m hoping with all of my heart for the latter.
I'm fragile, broken, sick, and fighting with all my might. I'm tired. Weary. But – I am better described by the strength and the pure joy I've chosen to focus on, so much so that the questions and worries sort of wait in the corner, for moments they're finding are harder to steal. I choose to define my story as one of the impact instead of pity. Can I share a bit of it with you?
The Story's Unfolding –
As a sophomore in college, I began having pain that affected how I walked, how I slept, and how comfortably I could sit in class. Because of this, I’d go home, tell my doctor and he’d refer me to rheumatology. Then, rheumatology would run tests. Those tests always came back stellar and I was left with the advice to manage my stress and depression better because clearly, mental illness was manifesting physically.
That story was my story on repeat for eleven years. There were diagnoses of rheumatoid arthritis, which was later reversed (because that’s a thing), and fibromyalgia (because when they don’t know what’s wrong, that’s what you have).
As life continued to be fast-paced, stress levels remained high and my pain, and then fatigue, got to a place I couldn’t manage it without medicinal intervention. I continued to advocate for myself as I was dismissed time and time again. Because I prefer a functional medicine approach to health, I wanted to avoid the pharmaceuticals doctors wanted to give to manage my pain. Despite it all, I didn't accept that I was someone who poorly managed anxiety and depression and that my symptoms were caused by “something in my head”.
After a move, and finding a new doctor's office, I made an appointment to meet with a Physician’s Assistant. Out of frustration, I said,
“I don’t care if you, or anyone else, thinks I’m crazy. There is something wrong and I want to start over. Do all the tests, but we have to find it.”
She looked at me and said, “I believe you.” Her words caused all my pieces to crumble to the floor that day. Since then, she has helped me pick them up, one at a time – giving them back to me, but not before carefully and thoroughly inspecting each one. There was the first gift of suffering in my story.
I am so grateful for good humans.
Uromodulin Kidney Disease
Simultaneously, I learned of a rare gene mutation that can lead to kidney failure was found in my family. After a genetic test, it was confirmed – I have the mutation. The specific mutation that my dad, uncle and I have is unique to us – meaning we are the only known family with our exact mutation.
As of today, my kidneys are functioning really well. This isn’t normal for someone my age who has this mutation. Having Uromodulin Kidney Disease means I’ll be studied for the rest of my life and my kidneys will be monitored. While there is promise in the pipeline for a therapy, currently, there is no treatment outside of dialysis or a kidney transplant. Having been identified, used in research and contributing the future management of this disease defines the second gift of my suffering.
The next six months revealed more
First – chronic Lyme disease. A heavy round of antibiotics helped, but overall, I was, and still am, struggling. My PA told me to “hang in there” and that we’d keep digging.
The Cherry on Top of the Diseased Cupcake – Hypophosphatasia
Digging deep, asking questions, and years of medical background and knowledge between us both could not have led to the next revelation. Only God answering prayers allowed for what came next. Through a chance lunch with a drug rep, my PA learned of a disease called hypophosphatasia. Every detail the rep gave about the disease raised triggered thoughts of our conversation for her.
As we spoke, she explained that this disease is another, very rare, gene mutation that often presents as a rheumatological issue. This explained why I had been sent to rheumatology so many times. I was going to referred again, but this time, because there was a particular doctor who was at least familiar with the disease.
After some more blood work, a diagnosis of osteoarthritis, and the identification of other symptoms that define the disease (neurological and respiratory complications), I was diagnosed with Hypophosphatasia. There is a single therapy for hypophosphatasia – enzyme replacement therapy via multiple injections per week.
The Gift of Disease
Six months. Uromodulin kidney disease, Lyme disease, and hypophosphatasia. It’s a lot. But that's life. A lot is given to us and how we choose to respond defines the quality of our life.
I've got a few diseases, but I am not defined by them. Instead, I take it as my responsibility to see them as gifts of connection. Sharing my story allows me to connect with others, counsel, educate, and love them where they are.
Educating myself on using food and exercise as medicine has gifted me the opportunity to teach others how to do the same. Understanding that, in large part, our genetics are not our final destiny, but rather a road map. The direction we choose to follow is massively impacted by the environments we create. To learn more about this truth, check out Dr. Jeffery Bland's book, The Disease Delusion.
The gifts of my diseases have grown into strength, courage, knowledge, and connection. It's because of this that I believe it is our responsibility to use our circumstances, good or bad, to love and encourage others through our experience. Now, I encourage you to identify the gifts of your suffering and share them to change lives. We were made for that. I believe this with all that I am.
As of today, I have managed 2/3 of my diseases with lifestyle! I am 5 months into treatment for hypophosphatasia and doing well.
I would love to connect with you! Please find me on Instagram at @amanda.m.haile
About the Author
Amanda Haile is a Nutrition & Fitness enthusiast with 8 years experience. She coaches others on building health from the inside out and uses her own experience battling hidden disease to teach people that their environment (mental, physical & emotional) has greater influence on their health than they may understand. Her signature style is to teach people how to take baby steps toward health, so that changes stay exciting, are manageable and sustainable. Feel healthier and more confident so that you’re living a life of health, joy, and happiness that will bleed into your success and relationships. You can follow her on Instagram at @amanda.m.haile
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