Voices Across America

Mackenzie’s Answers Started with Community

dog avatar

Mackenzie

State: California
Congressional District: CA10

Diseases

Chronic Pain, Rare Disease

Issues and Challenges

Mackenzie has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Gaslighting, Invisible Illness, Prior Authorization, Social Security Disability

My Story

It was 2015, I was 24 years old, and a doctor was telling my parents and I that I needed my 5th ankle surgery for the same broken bone because "it just wasn't healing" 6 years later. I knew in my gut that something wasn't right and my body was telling me in its own way. I already had multiple doctors tell me it was in my head and to just trust them, but we followed our guts and got another opinion anyway. This opinion led me to a doctor that knew within minutes of examining me and my medical history that I had a disease called hypermobile Ehlers-Danlos Syndrome (hEDS), which at the time was considered rare. Suddenly all the odd and misplaced pieces of my life fell together in this storyline of how we got to this point. It all made sense. I wasn't crazy.

Unfortunately, while everything started to make sense, more symptoms started to arise. We started the process over and still, no one knew what was going on. It was because of connecting with the EDS community that we decided to seek out highly reviewed doctors. We made the decision to travel from California to Virginia, and again I was quickly diagnosed with hyperadrenegic postural orthostatic tachycardic syndrome (POTS). It is amazing what seeing informed doctors will do for your physical and mental health, but unfortunately it is not that easy. Access is difficult and it can take a serious financial toll on people. It was 2018 when I found out about my POTS and I thought, "Now I can move forward. I have all the answers."

I painted a false reality for myself. Getting a diagnosis was not the end, it was just the beginning. Each time you get a new diagnosis it is the beginning. You have to adapt to a new reality, new protocols, new treatments and management. And then, each time new symptoms come up that don't fall into an already established diagnosis, you start the search for answers over again. It is a cycle that we become experts in.

Fast forward to 2023 and I just received my most recent diagnosis of Myalgic Encephalomyelitis. Sometimes I feel like I am part of this club that no one wants to be in, collecting diagnoses that no one seems to be able to treat. But this club is also where I have found my community. All of us experiencing rare, invisible, and chronic illnesses just get one another. My story probably doesn't end with a 2023 diagnosis. In fact, I know it won't, but I hope that more story inspires others to trust their instincts and know their body.

You are the expert on you.

My Motivation and Inspiration

I have always had this deep desire to help others. Little did I know that throughout my life I would need so much help because I live with multiple rare and invisible illnesses. Going through all that I have and the experiences I have learned from is what motivates me to advocate for others. If there is even one person that I can help, then I am making a difference.

I strongly believe that regardless of condition, our community of patients is so strong and can make an impact in society. I am inspired regularly by others and that inspiration motivates me to do more for others and the rare disease community.

Share This Story

Find More Stories

Browse the map or filter by:

Click on pins to view stories.

ZOOM IN OR OUT TO CHANGE THE VIEW.

Get the most from every Story

Find A Compelling Patient Story

Share it on social media.

Share Your Story On Our Network

Share your insights, challenges and what keeps you going.