We are excited to talk to Ilana Jacqueline – chronic disease patient, advocate and author of the new book Surviving and Thriving with an Invisible Chronic Illness.
Living with invisible chronic conditions can be frustrating and overwhelming – you often have to explain “why” in the face of skepticism and doubt – and that’s in addition to managing your symptoms, treatments and therapies.
Ilana has two autoimmune diagnoses- PIDD and autonomia. If you are unfamiliar with what those are, you are not alone. As she share in this episode, a greatly beneficial action for her is to keep a binder on her at all times, one with the basic requirements she needs, that may not be obvious from looking at her, but may wind up saving her life.
Because after all, she is the expert on living within her body, not the medical professionals.
Another topic she discusses with us is the subject of dating. When do you tell your dating partner that you have a disability?
Ilana hopes that her book is not seen as a depressing story of enduring disability, but a hopeful and humorous take on the subject. And based on our conversation with her, we believe it is!
A couple other resources Ilana mentioned:
FDNA Genomics Collaborative: http://www.genomicscollaborative.com/
Invisible Disability Association: https://invisibledisabilities.org/
Ilana’s social media: