My identity, my soul, and my self-worth are not limited to my medical diagnosis. I have to advocate for my well-being because no one else will. We have the powerful ability to live a life, that isn’t necessarily always positive, but is conducive to our inner growth and evolution. We can decide to stay stagnant in a miserable or tepid life; or we can lead a life filled with joy, a life that ignites us, and a life that is of contribution to humanity.
I was diagnosed with Nephrotic Syndrome at eighteen months. Nephrotic Syndrome is a kidney disease where the kidney filtration system works improperly and causes protein leakage in the urine. Symptoms include extreme swelling throughout the body, which leads to other health issues. If left untreated, it can lead to kidney failure. The treatment is usually high doses of prednisone - a synthetic steroid used to suppress the immune system and has a host of side effects when used long term.
That diagnosis defined my childhood. Growing up, I felt like I was the “sick” kid. I couldn’t go to daycare or preschool due to my low immune system. I was on a low-salt diet, so I couldn’t eat a lot of foods that the people around me would eat. I saw doctors frequently and had to be admitted to the hospital a few times due to complications. I definitely never won the perfect attendance award at school, that’s for sure. I felt like an outsider at school. I hid the disease from my classmates because I didn’t want their pity nor to feel different, but the secrecy brought on a lot of fear and shame. I was scared that people were going to find out the truth and no one would like me anymore. That I would be ditched by the people I care about and would lead a lonely life. Guilt and shame would appear whenever I couldn’t be honest about my long absences from school or weird symptoms that would crop up from the disease.
Finally at fifteen during one of my hospitalizations, I couldn’t take it anymore. I no longer wanted to live like this forever. I didn’t want to be dependent on a caregiver, be reliant on medications, nor feel chained to doctors and hospitals. I desperately wanted to be free from the burdens of illness. I longed for freedom and to stop feeling imprisoned in my body. I craved a life where my dreams and desires were possible. I just wanted to be a “normal” teenager. At that moment, I surrendered and gave up the fight for control of trying to live a perfect life with this secret. I decided right then and there that I was going to find a way to heal and I was committed to the journey. I didn’t know how I was going to do it, but I had a lot of hope and faith I was eventually going to find a way.
It actually wouldn’t be nearly seven years later until I was led to the things I needed to do to heal myself. I started out seeing an acupuncturist. Then I was reading some health blogs and that led me to books about holistic nutrition. I enrolled in an integrative nutrition school and became a certified health coach. After that, I met one of my mentors who taught me about energy work. Of course, I wanted to learn how to do energy work on myself so I became a certified practitioner. I saw a functional medicine doctor who helped me uncover my food allergies. I took personal development workshops and did wellness retreats. I was open to everything and anything that could help me be healthy.
Each step helped me to stay in remission and medication-free for seven years. It made me realize that when disease occurs, it is our body trying to communicate that it needs our help. It also means we must advocate for our health and seek treatment to get to the root of the cause and not just try to mask the symptoms. As patients, we have to be observant of our bodies, our lifestyle, understand what the medications that we are taking are doing to our bodies, and understand the decisions being made in regards to our welfare.
During my last relapse that occurred before the summer of this year, I was very transparent and proactive in my health. I made sure that I had a two-way conversation with my doctor, asking questions about medications and why he made the decisions he did in my treatment. And if I didn’t feel comfortable with something, I spoke up and told him my reasoning. I also took what I learned within the last decade and implemented it in my healing. I focused on a whole-food, nutrient-dense diet that was going to boost my immune system. I also made sure to clear my schedule and make time to rest. I meditated and flooded my mind with positive thoughts and emotions. I was honest with friends and family, and with that transparency, I was able to get help and support that I wouldn’t get if I kept it a secret.
Importantly, I took my experience as a way to personally grow and evolve. I pondered how this situation was a teaching moment for me. How can I shift this challenging situation into a positive perspective? How can I become a stronger person from this? What do I know now that I didn’t know before this? How can I use this experience to help others? I also became vulnerable and honest with my experience. I feel telling the truth sets you free, so you don't feel tied and bound to guilt and shame. It's also ok to ask for help because we as humans don't need to struggle alone with our suffering. In connecting with others, we may be helping someone else who is battling something similar.
This growth mindset helped me to become resilient in overcoming other challenges - knowing that whatever I was going through was temporary and that at the end of it I was going to gain more wisdom. I now consider myself an advocate for integrative wellness - wellness that is physical, mental, emotional, and spiritual. I believe there are no such things as negative or bad experiences in our lives. There are uncomfortable experiences that trigger something within us - an area within us that needs love, healing, and growth. We can decide to be martyrs and remain stuck in the discomfort; or we can design a life that embodies love. Always choose love.