When You’re Fighting a Chronic Illness, Self-Advocacy Becomes Survival
by
BRENDA SNOW
Nearly 30 years ago, my life changed forever when I was diagnosed with multiple sclerosis (MS). But before I received the correct diagnosis, I was initially told that my symptoms were related to mental illness. That experience left me not only physically and emotionally exhausted, but also struggling to feel seen, heard, and believed within the healthcare system.
I learned very quickly that living with a lifechanging illness often means fighting two battles at once, the disease itself and the fight to receive the care and support you deserve.
For the 75% of American adults who live with at least one chronic illness, that reality is all too familiar. Managing appointments, navigating insurance, understanding treatment options, and advocating for yourself can feel overwhelming, especially when you’re already exhausted from simply trying to get through the day.
Over the years, both through my own experience and through working with thousands of patients as the Founder and CEO of Snow Companies, I’ve seen how critical self-advocacy is to a patient’s journey. That’s one of the reasons I wrote Diagnosed: The Essential Guide to Navigating the Patient Journey, to help patients and caregivers feel less alone and more empowered.
Here are a few lessons I’ve learned along the way.
Know Your Rights, and Use Them
One of the biggest misconceptions patients have is that they should simply accept whatever care they’re given. I want people to understand that it is okay to ask questions, seek additional opinions, or even completely change your care team if something doesn’t feel right.
Whether it’s requesting an in-person visit instead of telehealth, pursuing a second or third opinion, or advocating for different treatment options, you deserve care that makes you feel supported and respected.
There were moments in my own journey where persistence was the only thing that got me the answers and care I needed. It can feel exhausting, but advocating for yourself is not being “difficult” it’s protecting your health and your future.
I always encourage patients to familiarize themselves with the Patient Bill of Rights and remember that their voice matters in every healthcare decision.
You Don’t Have to Do Everything Alone
Self-advocacy takes energy, and chronic illness can drain every ounce of it. There are going to be moments when you simply don’t have the strength to fight every battle on your own, and that’s okay.
The good news is there are incredible organizations dedicated to helping patients navigate the complicated parts of illness, whether that’s insurance issues, transportation to appointments, financial assistance, or paperwork that feels impossible to manage while you’re sick.
Organizations like the Patient Advocate Foundation can make a tremendous difference for patients and caregivers who need additional support.
One of the most important things I’ve learned is that advocacy doesn’t always mean doing everything yourself. Sometimes advocacy means knowing when to ask for help.
Vulnerability Is Part of Advocacy
For many people, being vulnerable feels uncomfortable. We often think we need to appear strong all the time, especially when dealing with illness. But in my experience, vulnerability is actually one of the most powerful forms of self-advocacy.
Being honest with your family, friends, caregivers, and medical team about what you need, and what you don’t need, creates stronger support systems and healthier boundaries.
Your loved ones cannot support you in meaningful ways if they don’t understand what you’re going through. Speaking openly about your fears, limitations, and needs doesn’t make you weak. It allows people to show up for you in the ways that matter most.
A Diagnosis Is Not the End of Your Story
After living with chronic illness for three decades and working with thousands of patients over the last 25 years, I know how isolating a diagnosis can feel. In many ways, patients and caregivers go through an emotional journey that mirrors the stages of grief as they try to adjust to a completely different reality.
But I also know this, there is still life, purpose, joy, and connection ahead.
That’s the message at the heart of Diagnosed. I wanted to create a resource that combines honesty, humor, and practical guidance to help people regain their footing after a life-changing diagnosis.
Because while illness may become part of your story, it does not define the entirety of it.
