Identity Crisis

The most ironic part of becoming ill with ME/CFS is how it renders me incapable of doing anything I once defined myself by.

I used to consider myself an athlete; running half marathons every year, swimming, going to barre and boot camp classes, strength training, and playing recreational sports. I used to pride myself on my work ethic; always the first one in and last one out of the office, consistently exceeding my sales quotas, building a career foundation where I could quickly excel and climb the corporate ladder. I used to consider myself beautiful; I would love to create outfits and get dressed up to go to work, go out, or just run errands. I used to be adventurous; I loved traveling, meeting new people and learning about new cultures and ideas, constantly pushing myself to evolve. I used to consider myself smart; I graduated from a top university Phi Beta Kappa, received multiple departmental awards, enjoyed learning new languages in my free time, was constantly reading, and grasped complex concepts and could solve intricate problems easily.

All of the above are currently no longer part of my identity. My interests remain the same, but the ability to pursue them without crashing is minimal. I am currently reduced to 7-8 hours days where I move from my bed to my mom's couch. Typical activities include reading (currently: The Goldfinch), watching TV (currently: True Detective), and cuddling with my dog. On a good day I can lay outside and tan for 30 minutes, or do a short tranquil yoga video, or play a couple songs on the piano. Never all three in the same day, though.

I have placed so much hope in my antiviral and holistic treatments that I have not completely explored what it will mean to live in this minimized state for the rest of my life. Because ME/CFS is a complex illness and has received such little government attention and funding, there is not a cure. I am extremely lucky to have even been admitted to the Stanford Clinic because they are arguably the top institution in the world for ME/CFS. Nonetheless, even on their background site they assert that while "we have been able to successfully identify several subgroups of patients whose lives have been dramatically changed with our approach" but "it is important to emphasize, however, that our approach does not work in all patients."

 Becoming so sick so suddenly was such a random occurrence that I still, seven months later, believe I am living in a Twilight Zone episode and at any moment will wake up again, refreshed and healthy. What options do I have besides to hope that I am one of the patients who responds to antiviral treatment? As someone who constantly wants to execute and perform, it is frustrating beyond belief that I have no choice but to accept where I am and wait. Both my holistic and Stanford doctors told me that we should see results/improvement in six months. That's a long time to go crazy.

Who am I if not the athletic, intelligent, adventurous fashionista who was kicking ass and taking names? Perhaps the scariest part isn't that all that has been taken from me is gone, but that what I'm left with isn't good enough. I'm scared, I'm weak, and I am vulnerable. I can't defer to academic accomplishments or amazing outfits anymore (although I have invested in some glamorous pajamas). I'm raw and desperate and have lost myself in this illness. I can't think straight and can barely move. And yet, there is a part of me still fighting, a part of me who has opted to write these words and thereby actualize them. I hope that in the absence of all other traits, this part will strengthen, grow, and continue to fight. Xo

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Medical Update: My NK cells were very low, but hopefully the Naltrexone coupled with boosting foods like blueberries and curcumin will reverse this. I'm currently on week two of a cleanse provided by my holistic doctor. It entails eliminating all hypoallergenic foods and I make three Opticleanse shakes a day. I hate it and feel weak but hopefully it's doing its job. I also believe I am feeling ill from the initial phase of antivirals, which according to Dr. Martin Lerner's Antiviral Studies, predicts a positive response to the treatment. Fingers crossed.