Article by llana Jacqueline, writer and patient advocate
I don’t generally go into the long and sordid story of how me and the majority of my family get on with my chronic illness. But what better time to explore how uncomfortable the tea parties with the skeletons who live in my closet go than right around the holiday season?
I wouldn’t feel right going into who said what, but I hope some general advice can help others deal with their families and their chronic illness during this time of year.
Nothing says we’re kin more than hearing I think you’re faking an illness while on your eighth day in the hospital. And nothing spells out I love you more than taking six agonizing months to decide whether or not you’ll give a vial of blood for genetic testing (even if it means not having to watch your relative rot away from a progressive, rare disease).
Having the support of your entire family is a pipe dream for most patients – especially when it comes to invisible diseases like fibromyalgia, crohns, ehlers-danlos syndrome, narcolepsy, postural orthostatic tachycardia syndrome, lupus and immune deficiencies…