Podcasts about ilana jacqueline

Send us a textMedical gaslighting is when a provider shirks a patient's concerns and leaves them without a diagnosis or treatment plan.Unfortunately, this experience is all too common for patients, especially women.So, how can patients tackle the problem and get the care they need?In this episode of CareTalk, David E. Williams and John Driscoll meet with guest Ilana Jacqueline, patient advocate and author of “Medical Gaslighting,” to discuss why medical gaslighting occurs and what patients can do to get the care they deserve.This episode is brought to you by BetterHelp. Give online therapy a try at https://betterhelp.com/caretalk and get on your way to being your best self.As a BetterHelp affiliate, we may receive compensation from BetterHelp if you purchase products or services through the links provided.TOPICS:(0:21) Sponsorship(1:40) Meet Ilana Jacqueline(2:21) Ilana Jacqueline's Experience with Medical Gaslighting(5:51) How Women Experience Medical Gaslighting(7:34) The Consequences of Medical Bias(9:54) Why We Need a Guide to Combat Medical Gaslighting(11:36) How Patients Should Handle Undiagnosed Conditions(13:26) Recognizing the Signs of Medical Gaslighting(15:18) The Moment Ilana Jacqueline Took Control of Her Health Journey(17:14) Bringing Awareness of Gaslighting to Providers(19:30) Approaching Pain Management as a Patient(22:50) Do Medical Providers Actually Review Feedback?

Author and patient advocate Ilana Jacqueline experienced medical gaslighting from a young age. At age 19 she was diagnosed with Hypogammaglobulinemia, a rare immunodeficiency.  While navigating young adulthood with an invisible illness, Ilana also faced lots of medical gaslighting, encountering doctors who shamed her out of seeking care. Ilana has devoted her career to patient advocacy. Through her work, as well as public speaking, social media, and writing books (Surviving and Thriving with an Invisible Chronic Illness, and the upcoming Medical Gaslighting: A Guide to Help You Recognize It, Prevent It, and Fight For Your Life) Ilana helps patients survive and thrive with chronic illness, and spot and combat deadly medical gaslighting. If you have experienced medical gaslighting, you're not alone, and Ilana is in your corner.   For more information about Ilana Jacqueline, visit our website at madevisiblestories.com/podcast Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance. This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review! Join the conversation and connect with us online! Website: madevisiblestories.com Facebook: madevisiblestories Instagram: @madevisiblestories LinkedIn: madevisible

What IS medical gaslighting? Have you ever been forced to play "Doctor Hot Potato"?  You know, when you go to your doctor and have a complaint about your body, but your doctor tells you its all in your head and passes you off to someone else? Yeah that.Or maybe you are being "comorted out of care"- assured there really IS nothing wrong (when there really is!) and before you know it you have been manipulated into gaslighting yourself. Ilana Jacqueline has been a victim of medical gaslighting for most of her life- born with chronic illness that went undetected, she found herself, as a young adult, going from doctor to doctor seeking help- to no avail. Ilana has turned her painful experiences into her subject of advocacy and works to ensure she uses her social media channels to educate and empower those who are seeking answers for their health, and continue to fight to be believed about their pain.JessB shares her own experiences of being gaslit and JessK offers all her usual insightful commentary. This episode is for all the women who have been dismissed in the doctor's office- and beyond.Meet Ilana:Ilana Jacqueline is a patient, an advocate, an influencer, an author, and an educator on the topic of medical gaslighting. She is the author of the book Surviving and Thriving with an Invisible Chronic Illness (New Harbinger 2018) and the upcoming Medical Gaslighting: A Guide to Help You Recognize it, Prevent it, and Fight For Your Life (BenBella Books 2024).  To learn more about Ilana and her work visit:  Ilana JacquieineSupport the show

Session One of the LEAP into Advocacy Virtual Summit is titled Utilizing Social Health Concepts for Transformative Healthcare Solutions. The session moderator is AudreyStephannie Maghiro, Research Coordinator at the Undiagnosed Diseases Network. The session presenters are Health Union's Sarah Coff, Senior Community Manager and Kristine Zerkowski, Vice President of Community. The fireside chat includes Sarah Coff, Senior, Kristine Zerkowski, and Ilana Jacqueline, Associate Director of Community Development at Health Union. The LEAP into Advocacy Virtual Summit explores how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. We hope you enjoy this special audio edition of the E.WE Foundation's LEAP into Advocacy Virtual Summit. The E.WE Foundation is a 501c3 healthcare advocacy organization. To learn more visit www.theewefoundation.org. --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/beingrare/support

As a chronically ill child, Ilana was repeatedly accused of faking her illness when seeking medical care. Doctors refused to dig deeper into why this particular child was consistently afflicted with bacterial infections and viruses that took abnormally long to heal, choosing instead to blame the parents or Ilana herself. […]

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 

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!   Check out her book Surviving and Thriving with an Invisible Illness at Amazon or at chronicillnesssurvivor.com and check out more of her writing at Let’s Feel Better blog.   A couple other resources Ilana mentioned: TV Show: Behind the Mystery of Rare and Genetic Diseases FDNA Genomics Collaborative: http://www.genomicscollaborative.com/ Invisible Disability Association: https://invisibledisabilities.org/   Ilana's social media: Instagram: https://www.instagram.com/ilana_jacqueline/ Twitter: https://twitter.com/IlanaJacqueline Facebook: https://www.facebook.com/LetsFeelBetter/  

Surviving & Thriving with an Invisible Chronic Illness.

People with a chronic illness may be able to work, but commuting to a 9-to-5 job in an office might not be ideal. Chronically Employed (http://chronicallyemployed.com/) is a new website that offers job listings, career advice, and stories for people who continue in their careers after a diagnosis. We spoke to Ilana Jacqueline, editor-in-chief of Chronically Employed, about the new site, the changing view of employers toward work-at-home employees, and the growing opportunities for jobseekers with a chronic illness.