If you know me at all, you’ll quickly realize that this was not easy for me to post. But it’s been a long time coming.
I recently read a book that really hit home. If you missed my post about it, check it out here! Dr. Brown talks about shame, but not the shame as most people define it. She defines shame as the “…feeling or experience of believing that we are flawed and therefore unworthy of love and belonging”, even due to things we cannot control. And I realized that my “…fear of being perceived as unworthy [was] enough to force [me] to silence [my story].”
So this is [part of] my story. As short and sweet as I could keep it.
In 1996 – the summer before starting 6th grade – the dreaded middle school – I woke up one random morning with hives. Red, itchy, annoying hives. To save everyone the super details – after numerous appointments I ended up at an allergist (still hivey). They tried to figure out what I reacted to – put me on weird food diets, this pill and that pill and more pills. We tried one thing after the next until there was finally a medicine combination that worked! I’ll never forget waking up on Christmas morning, completely hive-free for the first time in over 4 months (not even kidding on that one – Christmas miracle at its best). Happy ending, right?
Unfortunately, in all my appointments and tests, they noticed my platelet count gradually dropping. Again, more referrals, tests, and appointments. It was a ruling out game: not a thyroid problem, not leukemia, not lupus. So I landed at the AFLAC Cancer & Blood Disorders Center at Children’s Healthcare of Atlanta with, in my opinion, the best hematologist (and nurses) in the state (and probably the country). Eventually I was diagnosed with Idiopathic Thrombocytopenia Purpura – ITP. About 1% of the population has ITP – but most cases are seen in younger children and older adults. I was a teenager. Commence blood work, lots of needles, infusions, and procedures. My doctor worked and worked to figure out what caused my ITP as well as finding a treatment that would raise my counts.
After years of both the “usual” and experimental treatments, including chemotherapy and my spleen being removed (I even have a picture of it – my spleen, that is), we found a treatment that “worked” – at least temporarily. So I had a port inserted (my veins just couldn’t take it anymore) my senior year of high school and began a ten year routine of infusions. Sometimes it was every week, sometimes every 8 weeks, or anywhere in between.
I’m not gonna lie – this is not a story I share openly. If someone asks about my medical bracelet, I’ll glaze over it with a “oh, it’s just a blood thing.” But as Dr. Brown’s book helped me realize, I don’t want to be “buried or defined by an experience that, in reality, is only a sliver of who [I am].” Yes, it was/is a huge part of my life and truly made me who I am today, but that does not make me weird or different. It makes me stronger. And it does not completely define who I am.
I am glad to say that for over a year now, for no reason other than God’s plan, I have gone treatment-free and had my port removed about 8 months ago. Sure, it may change at any second and yes I still have to be careful, but that’s who I am. And I should never be ashamed of who I am.