I started #ChronicBoss to create a space for people living with chronic conditions to show off that they aren’t just surviving, but thriving. That even though you may live with one or more chronic conditions, there are still endless opportunities to grow, achieve, pursue your passion, and be a boss! often think of the millions of young women when they are first diagnosed with an autoimmune condition. When they are told they will carry this diagnosis with them for the rest of their life. It’s terrifying. It’s devastating. It’s isolating. Questions race through your mind “Will I be able to run that marathon, start my own company, fall in love, have children, pursue my passion…” Fill in the blank with whatever matters to you.
I want these women to stumble upon #ChronicBoss and see how truly powerful those of us living with chronic conditions are. We are strong and resilient. We are patient and kind. We are leaders and change-makers. We are CHRONIC BOSSES.
I hope you will join me in using #ChronicBoss to show up and show off! Let’s own the narrative and tell the world just how truly remarkable us boss ladies living with chronic conditions are!
I only wish that when I was first diagnosed with multiple autoimmune diseases, I had someone to point me in the direction of all the resources that exist out there for patients and caregivers. This is by no means a comprehensive list but here are a few I've found to be helpful to get you started!
Millions of patients and caregivers come to Inspire for information and support from others like them in our private, anonymous, and safe environment. Join a community here and get help in every step of your journey from diagnosis through deciding treatments, to coping, to managing your condition.
Communities for select autoimmune conditions such as MS, psoriatic arthritis, IBD, rheumatoid arthritis and more
What I've learned dating with a chronic illness.
Dating with Chronic IllnessRead more
When Your Chronic Illness Reveals Who Your True Friends Are
IBD advocate Kathleen Nicholls talks about how chronic illness impacts interpersonal relationships
The American Autoimmune Related Diseases Association is a non-profit dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity. They are a great educational resource and way to get involved in advocacy.
Patients Rising Concierge is designed to support patients navigating the healthcare system, improve access to treatment for chronic diseases, and ensure that patients are seen, heard, and respected by every person in the healthcare ecosystem.
Disease Specific Advocacy Groups
There are many patient advocacy organizations dedicated to specific conditions. The National Coalition of Autoimmune Patient Group lists a number of them.
Autoimmune Centers of Excellence
Autoimmune centers of excellence across the country compiled by the American Autoimmune Related Diseases Association.
What to do when your doctor doesn't believe you
IBD advocate Jacklyn Green shares her experience when her doctor didn't believe her and the steps to take when this happens.
How to find the right doctor
Cancer advocate Michele Tschirhart shares the 13 questions you should ask yourself when looking for the right doctor.
Immunosuppressant drugs suppress, or reduce, the strength of the body’s immune system and are often used to treat autoimmune diseases. This article will give you an overview of the drugs and how they work.
Patient opinion on biologics
Patients share what they wish they knew before starting a biologic (a common treatment for autoimmune diseases).
A program that combines a mobile app and live health coach to help people identify possible autoimmune triggers and support them in adapting their lifestyle to manage symptoms.
"Gold standard" for identifying foods that may fuel symptoms and contribute to inflammation. For example, I've found I feel a lot better when I avoid gluten, dairy, and soy. Food is really important to me so I am not too hard on myself. I try to follow the 80/20 rule and avoid some of these inflammatory foods about 80% of the time and let myself splurge on the weekends!
Your rights & affording treatment
IBD advocate Alison shares tips and tricks she's learned to help manage the administrative and financial burdens of chronic illness.
GoodRx provides prices and discounts for prescription drugs to save you up to 80%.
NeedyMeds is a national non-profit organization that maintains a website of free information on programs that help people who can't afford medications and healthcare costs.
The PAN Foundation
The PAN Foundation helps underinsured people with life-threatening, chronic and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.
Many pharmaceutical companies that make medications have Patient Assistance Programs to help you pay for your meds. You can use this database to search for assistance programs. (My biologic assistance program has helped get my meds down to $5 an injection!
Better makes it simple for anyone to get back the money their health insurance owes them. Because every minute you don’t have to spend on the phone with your health insurance company is a minute you can focus on what really matters.
Site to help you navigate selecting an insurance plan. Understand your options, get a recommendation, and enroll with ease.
Site to help you understand your health insurance rights.
Navigating Step Therapy
Is your insurance forcing you to try less expensive medications before you can access the treatment your doctor wants you to be on? Use this guide to download resources like appeals letters so that you can get the treatment you need faster.
Clara helps walk you through the clinical trials process by recommending trials that could be a fit for you, and helping you take steps to enroll.
Autoimmune disease patient registry. Sign up to get notified about research studies you can get involved with.
Dr. Robert Phillips
Dr. Phillips and his team specialize in helping patients cope with chronic illness. His practice sees patients via telemedicine and he has a series of books published on coping with chronic illness including Newly Diagnosed? Now What? 153 Strategies to Help You Take Action and Cope After Your Medical Diagnosis