It’s Worse To Be Invisible With An Invisible Illness

I just watched an interview on “Good Morning America” by fellow journalist Meghan O’Rourke about her new book, “The Invisible Kingdom: Reimagining Chronic Illness.” While I was glad to see an acknowledgement of autoimmune awareness month and the struggles of people living with chronic illness, especially in a pandemic age, it was a little upsetting. As a black woman who wrote about my own nearly 20 year battle to find the correct medical diagnosis in 2014 (revised in 2017), I sent out my book with endorsements from bestselling authors like Paula Kamen, Wes Moore, Richard Cohen, Dr. Bob Lahita and Marya Hornbacher and was frequently told my story wasn’t universally relatable enough or there wasn’t a large audience for material. I know many authors experience this frustration but as a woman of color I find these phrases all too common from publishers to dismiss our stories.

My book came out and has been reviewed well from both the public and major publications like Publishers Weekly and Kirkus Reviews. I’ve also gone on to do more than a dozen interviews for articles, served as the ambassador for the NY autoimmune walk and done a blog on Huffington Post about chronic illness to educate the public.

While chronically ill women of color may not get a lot of national exposure it is important for us to tell our story. It is often said that representation matters to limit the feeling of isolation, despair and frustration. It’s also key to see messages of hope and perseverance. Perhaps if my book had been more widely available, I could have also saved my colleague Mrs. O’Rourke years of pain and the mental anguish while she searched for answers.

I guess my main point is I wonder when or if people will learn that we are all human; suffering, the quest for good health and mental wellness knows no color, gender or age. We all deserve an equal chance to be heard to reach someone else in need.

(I may be cranky because my body isn’t cooperating lately)

@gma #WomensHealth #SickButNotWeak #invisibleillness #chronicpain #chronicillness #invisibleillness #disability #spoonie #autoimmunedisease #autoimmunediseaseawarenessmonth

#publishing #blackauthor #writer #GMA

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