043: Ilana Jacqueline on Navigating Life with Invisible Chronic Illness
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Ilana Jacqueline is a best-selling author, speaker, patient advocacy strategist, and professional patient advocate. While her background is in PR, her career as a patient advocate started with an early blog, Let’s Feel Better, in 2012, and gave birth to the book Surviving and Thriving with an Invisible Chronic Illness – which was Lauren’s playbook when she first got diagnosed (Ilana has a way of saying it like it is and managing to stay sane and amused that is right up Lauren’s alley). She has a longstanding relationship with Global Genes, where she served as the managing editor of The RARE Daily for five years. She was later appointed the Manager of Patient Advocacy at FDNA, where she developed the Genomics Collaborative program. Most recently, she has joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit), and IDA (Invisible Disabilities Association), while also working at WEGO Health and continuing her regular column in IG Living. She has a long career of freelance writing, and has contributed to publications including The Huffington Post, Marie Claire, Everyday Health, Mashable, and The Miami Herald, among others. She speaks at medical, patient, and pharma conferences as well as consulting with companies on how the patient voice can improve the design of healthcare.
**Tune in as Ilana shares… **
all about Surviving and Thriving with an Invisible Chronic Illness
about life with PIDD (Primary Immune Deficiency Disease)
that her family is more holistic when it comes to healing – but that holistic approaches haven’t been effective in managing all her symptoms
that she’s eager to try varied approaches to her healthcare
how difficult it was to be taken seriously by doctors
that she lives with constant gastrointestinal issues, nausea, etc.
what PIDD is: a lack of antibodies to prevent illness; and how to treat it: intravenous immunoglobulin therapy (IVIG)
that she is one of the very rare few living with PIDD who do not have a positive response to IVIG – so now, she treats infections as they come (high-dose/IV antibiotics, etc.)
that she has survived pneumonia, sepsis, and other serious conditions as a result of PIDD
that she is constantly proactive about her health, prevention, and care
how telecommuting has enabled her to have a career without endangering her body
the role that self-care and boundaries play in her life, both personally and professionally
confrontations with strangers – and the audacity of the uninformed
what it was like to have a visible element to her chronic illness (in the form of a central or PICC line)
the “rite of passage” of being judged for using the disabled spot in a parking lot – when you have a parking pass and live with disability, but look young and able
why she’s solution-focused and doesn’t wallow in sadness
her “curiosity cards” – business cards that called strangers out on staring, and provided answers through her blog
escaping uncomfortable situations without always engaging
why it’s not a disabled/chronically ill person’s responsibility to educate everyone – but why instructing the public on how to respond is useful
her co-morbidities, among them dysautonomia (the dysfunction of the autonomic nervous system) – and why hydration and fluids are so important to her health
how her mom has shown up as her advocate – and discovered her own diagnoses after Ilana did
how she’s learned to mitigate medical trauma
how her husband has taken on the role of advocate from the beginning of their relationship
what it’s like to be a patient advocate
her realizations about friendship with chronic illness – and that relationships are a two-way street
other chronic illness warriors she admires
how she was diagnosed with pelvic floor dysfunction
the thin line between empowerment and shame in the chronic illness world
the importance of finding a good therapist This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)