In the healthcare system, systemic lupus erythematosus is considered a rare disease. In New York City, one patient decides to use her journey to advocate and empower others with lupus. These are her stories…
Monday, April 2, 2012
Miranda “Health” Rights
Superpower Day. If you had a superpower – what would it be? How would you use it?” – Wego H
As fascinated as I am with the wide world of Marvel and DC Comic superheros; I can’t seem to decide on a single superpower.
While pondering I flustered over whether I’d have super flying strength, but what good is that if someone throws a piece of kryptonite at you? I could have been uber rich with snazzy gadgets, equipped with my own butler but I think it’s mandatory to have a dark raspy seductive voice to go with the whole package and I’m fresh out of testosterone!
Frankly, I feel much more at home with the spunky villains prone to poisonous forestry and jewelry clad cat-napping. Each of them have sparkling characteristics. Superpowers in their own right, who do exactly as they please.
Is there some rule which proclaims it mandatory to dress up in a skin-tight suit and parade around town claiming to save the city? If so sign me up!
I’ll take the small electric purple catsuit complete with detachable incandescent wings, permanent body shimmer, and fluorescent hair extensions in every color of the rainbow and while you’re at it could you please throw in the cure for lupus! What was that!? There’s no cure you say? What’s my life expectancy you ask? Why, gee golly gosh darn!
If this is the case, it’s time for me to read you THE MIRANDA “HEALTH” RIGHTS.
You have the right to remain silent until the duration of these rights are complete. I have the right to remain silent and refuse to comply shall you inflict any harm upon my health. Do you understand?
Anything you negatively do or say may be hazardous towards me and my health. Do you understand?
You have the right to consult Dr. Google before speaking/approaching me with ignorance about my condition/and or health. If need be I can refer you to an Epatient advocate and have them present during questioning now or in the future. Do you understand?
If you cannot conduct a Google search, information will be selected for you before any uneducated responses or questioning. Do you understand?
If you decide to answer questions now prior to consulting Dr. Google and/or an Epatient advocate I have the right to stop communication with you at any time until you talk to an Epatient advocate or consult with Dr. Google. Do you understand?
Knowing and understanding these rights as I have explained them to you, are you willing to accept that knowledge is power and commit to acquiring that i nformation which pertains to my health before approaching me? (These rights are fictional; a creation of mine which I adapted from the US Constitution- Tiffany Marie Peterson)
These Miranda “Health” Rights are my superpowers!
From now on; should I be offered unsolicited advice ranging from:
It’s my fault that I have lupus, how a miracle herb can cure my disease, if only I just ate 10 vegetables a day lupus would disappear, how I should just quit while I’m ahead because there’s no cure, or any other ridiculous uneducated notion relevant to my illness I WILL READ THESE MIRANDA “HEALTH” RIGHTS out loud!
It may take courage, but it’s a necessity!
I will exercise my right to say NO to any situation that negatively affects my health regardless of what/who the offending party is. I only have one life; If I don’t value it then who will? If I don’t have respect for my own health then how can I expect someone else to? It is MY responsibility to take charge of my health care.
This may mean keeping a health journal to track my daily life with illness, sharing my questions and concerns discovered in my journal with my doctor. Asking my physician whether a medicine is right for me? Asking about alternative options, setting reminders to follow my treatment as prescribed. Getting copies of my medical records and reaching out to an offline/online health community when I need support. The list goes on.
There is no excuse for taking a back row seat on your healthcare journey. This is YOUR life, and you only have one chance to live it fully.
love and glitter,
Epatient Tiffany Marie Peterson
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