I’ve been wanting to share my story for some time now but have reservations because my feelings and values do not align with our culture at large. During the course of my journey I have had many people suggest or tell me that I am “wrong” or “deluded”, express concern and try to convince me to reconsider using drugs or surgery to elevate my platelet count. While I certainly understand their fear and appreciate their concern for my well-being, these interactions only served to make me feel hopelessly lost and alone. I desperately needed to be heard.
My hope is that perhaps there is someone else out there in the ITP community that feels like a “misfit” (in whatever way that may be) and my words may help them feel connected and understood. It is NOT my intent to criticize how others feel and choose to address their own health. Rather, my goal is for mutual understanding and respect. I strongly believe in the power of human connection. PDSA has been a game-changer for me in that it has put me in touch with a community of other folks who are also living with this condition that most of us have never heard of until someone told us we have it. Regardless of your platelet count, symptoms, or what living with ITP personally means to you, we share this common thread, and we’re all in this together.
With a platelet count in the range of 5,000-9,000 I have repeatedly received the message that I am not allowed to refuse conventional medical treatment, even though I [thankfully!] have relatively few symptoms and understand and accept the risks of living with such a low count. During the first year after my diagnosis I went through seven different drug treatments in different combinations and saw four different hematologists before I found one who was willing to help me safely get off pharmaceuticals. I do not hold a grudge against my previous doctors—I do respect them, feel they are very knowledgeable and good at what they do, and appreciate the difficult situation in which I put them—but I am extremely grateful to have found someone who is willing to work with me on my terms and help me reach MY healthcare goals. I am so much more than a number (5,000-9,000).
I recognize that death is a natural part of life and I have no desire to use drugs prophylactically to avoid it. Embracing this has eased my fears and allowed me to more fully appreciate the time I have while I am alive. I am focusing on improving my quality of life and learning to appreciate and work with the eccentricities of what my body does. For me, going into a treatment center every week for lab work and an injection to artificially elevate my platelet count was not something I could ever “get used to” because it so strongly goes against my personal beliefs. (I am particularly glad I’m not in this routine at the moment in the face of the COVID-19 pandemic.)
ITP has been a gift for me. It’s made me reevaluate my life and confront how much time and energy I’ve devoted to things that really aren’t important to me. I’ve used my diagnosis to get in better touch with myself and strive to live with personal integrity. For me, this has meant overhauling my diet to support a healthy immune system, learning and practicing better ways of coping with stress, learning to say “no” and tailor my activities to support my energy level and symptoms, avoiding risky activities, learning to reach out to friends and ask for help when I’m overwhelmed and need emotional support, and completing my Advance Directives and discussing with my family, friends, and doctors what I want and do not want in the event of an emergency. I wear a medical ID bracelet 24/7 with a secure online profile that includes important contact and medical information as well as a .pdf of my Advance Directives.
I’m thinking of all of you—my extended PDSA family—during this strange, disorienting time. Stay safe and be well.