How I'm Slowly Unpacking the Pain of Growing Up With an Undiagnosed Rare Disease

There is not a day that I think that my life could be different. Sometimes, I wish I could leave my past behind. However, it is my past that makes me who I am. I may be tough on the outside, but on the inside, I often break with each breath. My shell cracked and it will never be put back together. I wish I felt as strong as others believe me to be. I have said enough, but I have not said anything at all. I was hurt as a young child. I cried myself to sleep each night and prayed I would not hurt again. I learned to shove it in a box, and placed it on the top shelf.

You see, it is best to put my pain in a box. The laughs, the jokes, along with snickering hurt me more than physical pain. My body raged a war against me since I was young. Some of it was pain I caused, but most of it still eludes me this day. I must tell the truth. I often wish that I would not wake up. I am not suicidal; I just want the pain gone. I am hounded by fear that my box will fall, my body shattering in pieces. My body wages a war on itself daily. I have little to no control. I am fragile but not broken. I let the past flow down the river, just like a fallen leaf.

I tried to take my life long ago since my body tried on its own. I attempted more times than I can count. I don’t want to focus on the hopelessness, but on the revival of love and value of my life. What matters is I lost those I loved. I did not feel, and I hurt others each time. I refuse to take that “out” anymore. My heart stopped once and it did not faze me. But for others, I chose to try and love me.
picture of author smiling, with an IV in her arm, standing against a brick wall

I have been free from my mind for six years now. I listen to those I love. I listen to my heart. I occasionally forget why I choose life, it’s short-lived and I love why I want to lead change. I may only have scars on the outside, but my heart, my body, and the thoughts in my mind will never be the same. I live each day in fear, but also each moment is filled with joy. I want to be healthy.

I want my “normal,” whatever that may be. I want to help others just like me. I want to give back for all who saved me. I will fight. I put the pain in a box, but I have opened it, slowly unpacking it piece by piece. Day by day. I am not a child anymore, but I am often ignored by doctors. I am not healed. I never will be. I am, however, strong and beautiful and will continue to endure the adversities that cross my path.

I only cry once or twice a week. I can fall asleep most nights. I trust that those closest to me will not perpetuate the harm. I still am processing. I make strides in my health and well-being even if it is short-lived. I run up to challenges and face them head on. I speak my truth. I own my flaws and reactivity. My medical difficulties created a warrior who wants to lead her troops through the battlefield. I know and have learned so much. My knowledge can help others, if my body helps me.

I am the creator of my present, and my future. I am in control of how I react. I have hope that one day my fears will dissipate. I have faith in God; I am not alone. I live for my family sometimes, but more often, I live for me. I am worth it. I may be wounded, but I am a survivor. I am a living miracle. I choose to take care of myself the best I can. I choose life even if in the end it does not choose me. I may not change the world, but I will rise even if my troops are just me.

On April 3rd of 2019, I gained hope after receiving a diagnosis for which I fought 18 years. A diagnosis that still does not explain my daily anaphylaxis. Yet again, we exhausted the doctors and treatments one year later. We may have found the last shell among the rocks. More than tuition for a year comes the price of 90 minutes with the top doctor in the world for my rare disease. To travel or not travel to the epicenter of New York where COVID-19 flourished is the dice. If I roll, it will choose life or gamble with death. To have COVID-19 once again may end my life, the end of my mission to change the medical advocacy world. I must continue forward off the beaten path.

No one can feel what I feel, see what I see or have power over me. Day by day I continue to walk, sometimes crawl and others motionless. I have bruises from bumps along the way. I am alive. I grew from hatred to self-love. I accept this is my journey and until a higher power calls me home, nothing will stop me.

My journey has taught me that anything is possible. I believe you can reach your dreams, accept where you are, and transform into an abundance of self-love. I never thought I would be where I am today. I believe in you and always know self-love is possible for you too.

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