I wish I could respond individually to all the messages I receive, but if I’m unable to, I hope this page helps guide you to some resources that may help.

First, a disclaimer: I am not a doctor and I can not offer any medical advice. None. Zilch. Nada. Not even if I had the exact same issue. Please reach out to your doctor and don’t feel guilty about calling them if it’s an emergency. That’s what they’re there for. 

I do not take on individual cases as a patient advocate. I can not represent you. Why? (Isn’t that, like, what I do?) No, actually. I teach patients and caregivers how to advocate for themselves. Because no one knows your medical history and medical needs like you (or your caregiver) do. It’s important to me that you have the skills to protect yourself in these situations in ways an outside party can’t. That’s why I have resources to help you do just that.

Do you need advice on how to advocate for yourself against medical gaslighting? Girl, I wrote an entire book JUST FOR YOU! Check out Medical Gaslighting on Amazon, Audible, your fav indie bookshop, and if you can’t afford your own copy– your local library can get you a copy. 

Do you need help like RIGHT NOW? I’ve created hundreds of scenario videos on TikTok (@ilana_Jacqueline) and Instagram (@ilana_Jacqueline) and I can almost guarantee I’ve covered a situation similar to yours in those videos.

Do you feel you need to seek legal action against a doctor? You should reach out to a lawyer if you can meet the following criteria in a medical malpractice case:  (1) a professional duty was owed to the patient, but not provided; (2) a breach of such duty occurred; (3) an injury was caused by the breach; and (4) there were resulting damages. If this sounds like your situation, hit google with “your location” + “medical malpractice lawyer” and reach out to someone in your area.

Do you just need someone to vent to? While I wish I could hold space for everyone who is a follower of my work– I literally can’t. That would be so irresponsible of me to be like, “I’m so here for you!” and then have 30K plus people who want individual space with me. But here are some resource I think might help.

Advice From Ilana

• On getting sedation for MRI’s and other elective procedures.
• On changes I made to be successful with a chronic illness.
• On explaining why people with disabilities may not be able to work or work full time.
• On getting a second opinion.
• On how to respond and what to ask when you’re told all your bloodwork is normal. but you still feel sick.
• On being persistent as a patient.
• On concierge medicine.
• On taking your medications during pregnancy. (Resources/who to talk to–not medical advice!)
• On understanding palliative care.
• On finding a primary care doctor.
• On remote disability accommodations.
• On things that are normal (but annoying) about being inpatient at the hospital.
• On responding to unsolicited medical advice.
• On the myth of tertiary care centers.
• On traveling with chronic illness.
• On how to ask your doctor to take more in-depth notes.
• On why your disease population might not have diversity.

Ilana’s Product and Services Recommendations for Patients

Note: I only recommend a few products and services that I personally use. I will note which ones I get a kick back from recommending.

CEFALY Migraine Device – This migraine device needs no prescription and can be used in conjunction with all other migraine treatments. It’s a bit like a TENS unit that you put on your forehead. This has drastically lowered my pain and I think it’s as effective as Botox (Having tried both). I’ve been using mine for several years during intense migraine attacks as well as preventatively. It’s an expensive investment, but one I found to be well worth it. Using my code, “ILANA15” can get you 15% off your purchase. I do get a kickback when people use my code.

NEURAHEALTH – Neurahealth is a telehealth neurology clinic. I’ve been using this service for about a year and a half now and I’m a big fan. It’s great for patients who live in medical desserts where great neurology care is not available. They can work with services local to you to get imaging, bloodwork, infusions, etc. This was a game changer for me since my local neurology out in Southern WA was really disappointing. Their team is great at getting all my meds called in on time and getting me in for appointments when I need them. I do get a kickback, and you can use code ILANA15 for a discount.

BEDJET – The bedjet is a device I’ve had for a few years now (another expensive investment) but I would never have gotten through the hot Florida nights and later, the freezing Washington winters without it. It blows hot or cold air under your sheets (it’s not like a fan that would annoy you all night) and if you have temperature dysregulation issues from either dysautonomia, hormone issues or menopause–holy cow, this is IT. I do get a kickback and this is my referral link.

More Resources

From Behind The Mystery

• Behind the Mystery: Rare and Genetic on Lifetime TV has hundreds of episodes on different diseases and treatments available to view for free.

From Global Genes

From the Disorder Channel

• Taking Care is hosted by Rose Reif whose practice is focused on medically complex people and/or their parents.  She offers short strategies in each episode to improve your mental state. This is  one episode as an online example but the rest can be found on FireTV.
• Unfixed Mind is another series of videos on The Disorder Channel featuring chronically ill adults discussing their mental health struggles. You can watch the series on FireTV or online here.

For Menopause

• Menopause Chicks has quality, evidence-based health information translated into what it means to your own personal health journey.
• Menopause Chicks also has an enormous Facebook group to connect and share information with other women.

CoPay Assistance

• Good Days offers copay and travel assistance to eligible applicants.

Illinois Based Disability Assistance

• Advocates for Access offers housing, personal disability assistants, ramps, and community reintegration programs.

Mental Health Resources

• A LISTING OF THERAPIST WHO SPECIALIZE IN MEDICAL TRAUMA AND MEDICAL GASLIGHTING provided by Healthcare Revolution Collective.
• Open path collective offers a sliding scale for therapy.
• Curiosity Counseling offers specialized therapy for those with chronic illness, medical trauma, and offers EMDR. (Indiana and Arkansas only)

Saint Louis Based Resources

• Medical lending library through the Saint Louis Health Equipment Lending Program.

Disease Specific Resources

• The Facial Pain Association offers information for patients, youth, caregivers and a 1:1 program.
• The Thyroid International Foundation has resources for patients dealing with thyroid disorders.
• Dysautonomia International is the number one resource for patients living with autonomic dysfunction. (I’ve worked with them for many years and appreciate their resources, clinical trial programs, and their annual conference.
• The Immune Deficiency Foundation has educational programs for patients and clinicians, an annual conference, regional walks and meet-ups and a youth program.

Pain Management Resources

• The Hurt Podcast with The Female Pain Docs offers episodes that cover specific topics with experts in women’s health.
• Dr. Alopi Patel is currently taking patients with pelvic pain, licensed in NY and NJ.

Doctors I’ve Worked With Professionally

• *DISCLAIMER: I have not worked with these physicians as a patient and our work has been in a professional advocacy focused relationship.
• Alopi M. Patel, M.D., F.A.S.A. – The Hurt Podcast by The Female Pain Docs
• Dr. Jenaya Calderilla – https://primaryadvocacy.com/
• Dr. Danny Sands – https://drdannysands.com/
• Dr. Michelle Flaum – https://www.xavier.edu/counseling/directory/michelle-flaum

Becoming an Advocate

I’m often asked, “How do you become a patient advocate?”

You don’t need a degree to be an advocate. And you don’t need to spend money on expensive courses either! There are plenty of free resources to help guide you towards finding a career or hobby in patient advocacy.

The first thing to understand is that there are many different types of patient advocacy! Some advocates are patients themselves, others are caregivers, siblings of patients, or other community members who want to lend their voice and talents to the cause of promoting awareness, increasing disease understanding, and raising funds to research treatment and cures for a condition.

The other thing that’s helpful to understand is that advocacy is an industry of people devoted to using their skills to making the lives of patients better. What can you bring to the table to help in that effort?

For me, I knew that my skills were in writing, social media, speaking, and public relations. I was able to translate those skills into online resources like videos, books, and news coverage for health advocacy.

It’s also important to note that while there are patient advocates that work in clinical settings– like for hospitals, insurance companies, and with patients as clients– that is not the type of patient advocacy I do and some of those advocates may need degrees and specialized training to work in those settings.

Here are some sub-types of advocacy that you can focus your efforts towards: public speaking, patient influencing on social media, legislative advocacy, partnerships with healthcare and pharmaceutical companies for patient insights, nonprofit leadership, and developing skills to promote disease awareness through your own talent– like film and documentaries, books, articles and blogs, and other ways of communicating.

Patient Leader Certification Course through Health Union (A completely free 8-10 hour online course with accessibility options.)

If you’re looking for a free course to take to help you figure out what type of advocate you want to become, I would suggest taking the Patient Leader Certification Course. This was a course I helped develop and lend my voice to for the company I work for at my day job, Health Union. This course has advice, articles, videos, and voice notes that cover everything from leveraging social media and understanding the FTC guidelines for patient influencers, useful techniques for nurturing relationships in the advocacy field, to advancing health equity and promoting participatory medicine.

Register for the Social Health Network and begin taking the course.

Check out the FAQ’s for the course here.

Working with Non-Profits

Prior to my work at Health Union, I worked with different non-profit organizations including Global Genes, a rare and genetic disease non-profit. They offer a comprehensive library for patients who need assistance in their own situation as well as patients who are ready to be a part of the global solution. Check out some of their offerings below.

Becoming an Empowered Patient – A Toolkit for the Undiagnosed

How a Genetic Counselor Can Help You

Finding Your Fundraising Strategy

Using Storytelling for Awareness

Promoting Your Rare Disease Story on Social Media

The Feminist Bookshelf

If you’re interested in learning more about women’s health, here are some books to help you better understand the current landscape and how you as a patient and an advocate can make change in your life, your community, and in the way women are treated in the United States.

Medical Gaslighting: How to Get the Care You Deserve in a System That Makes You Fight For Your Life by Ilana Jacqueline

Surviving and Thriving with an Invisible Chronic Illness by Ilana Jacqueline

The Pain Gap: How Sexism and Racism in America Kill Women by Anushay Hossain

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbury

Generation M: Living Well in Perimenopause and Menopause by Dr. Jessica Shepard MD

Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Gleghorn

Invisible Women: Data Bias in a World Designed for Men by Caroline Criado Perez (Not just about Women’s Health but a super cool book about the entire world in the context of womanhood!)

Legacy: A Black Physician Reckons with Racism in Medicine by Dr. Uche Blackstock

BLEED: Destroying Myths and Misogyny in Endometriosis Care by Tracy Lindeman (Canadian)

Note: I’m still continuing to include resources on this page, if you have suggestions please feel free to send them via email at ilanawrites@gmail.com with the subject line “Advocacy Resource Suggestion”. I am only including free resources at this time.