Today (February 28th) is Rare Disease Day! (I don’t feel like saying “Happy Rare Disease Day” is accurate because nothing about having a rare disease is “happy”)
The fact that when I type my diagnosis on my phone or computer, spell check says it’s a word spelled inaccurately-is enough of a reason for me to advocate.
The fact that my parents & I receive messages, texts, calls, etc of friends and friends of friends allllllll the time who they themselves or someone they love/care/know about either has a) only been promoted to talk to a doctor about their medical condition because of my story/symptoms having similarities to theirs or b) have been diagnosed with any of my conditions and feel a little less isolated or have at least some comfort, peace and hope because they’ve seen/heard/read my story-is enough of a reason for me to advocate.
The fact that I have been told by MULTIPLE medical professionals that “it’s all in your head” or “have you tried taking a warm bath”, often because they have never encountered, treated or even heard of any of my diagnosis or anyone “like me” and/or can’t wrap their heads around the fact that someone could live day in and day out in this amount of pain when you “look normal” or “you can’t know what real pain feels like, you’re too young”-is enough of a reason for me to advocate.
The fact that the number of doctors who will even take on “a patient like me” is such a small, small number both nationwide & worldwide that are understandably overwhelmed by responsibility of having to all do it ALL-research, advocacy, treating patients & education, etc for the sheer number of us needing specialized & comprehensive care-is enough of a reason for me to advocate.
The fact we’ve encountered multiple doctors offices who have told us “our doctors don’t see those kinds of patients anymore-they were too frustrating and depressing” (yeah? while imagine living it day in and day out thank you very much!)-is enough of a reason for me to advocate.
The fact that research for my conditions is severely underfunded, under researched, under educated about and there’s no specfic protocol or treatment-is enough of a reason for me to advocate.
The sheer number of complex, chronic & also rare comorbid conditions that come along with this root cause diagnosis, conditions that are also often rare and under researched with no specfic treatment protocol & no cure-is enough of a reason for me to advocate.
The fact that my commitment to not letting my illness define me while sharing my story, while not letting it become my sole identity, when in fact my chronic illnesses are the LEAST interesting thing about me-is enough of a reason for me to advocate.
The fact that I have to suffer day in and day out with the root cause of my poor health being a degenerative condition with no cure-is sure as heck a reason for me to advocate.
My question to each of you is, will you join me? #CareAboutRare
