Voices Across America

My Patient Story

Nicole

State: Maryland
Congressional District: MD07

Diseases

Gastrointestinal Disease, Immune Disease

Issues and Challenges

Nicole has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Disability, Gaslighting, Housing, Invisible Illness, Job Insecurity / Loss, Prior Authorization, Social Security Disability, Transparency in Health Care, Underserved Community

My Story

Hi, my name is Nicky and I'm a Crohn’s disease and Ostomy Warrior, mother, mentor, and patient advocate empowering people like myself and others battling a chronic illness. The work I do in and out of the community as Lead Ambassador/Community Manager for Color of Crohn's and Chronic Illness supports the organization's mission to improve the quality of life for BIPOC who are affected by IBD, Digestive Disorders and associated Chronic Illnesses; through Education, Community, Advocacy and Research.

My IBD journey started in 1996 at the young age of 16, during the prime years of my life.  I was hit with the news of my diagnosis after a year of suffering from extreme weight loss (100lbs), abdominal pain, dehydration, vomiting, loss of appetite, chronic fatigue and severe diarrhea.  My primary doctor thought I was suffering from a bad bacteria infection, so my initial treatment was with antibiotics.  As time progressed my doctor realized that this was more than what he thought.  After receiving several tests it was confirmed that what I had been dealing with was an Inflammatory Bowel Disease that affects the lining of your digestive tract called Crohn's Disease. 

I knew nothing about IBD and no one in my family had ever heard of this disease during this time. I suffered in silence after my diagnosis, because I didn't see or know anyone that looked like me in this disease space.  The lack of education, diversity, inclusion, and resources has left me to navigate my disease with limited support.

I was initially covered under my mom's insurance in the early years of my diagnosis, but when I turned 21 was denied for having a pre-existing health condition once I applied on my own.  This significantly impacted my health and left me without care for over a year.  My disease was progressing and I finally was approved under the State of Maryland for health insurance.   Unfortunately, this was not the end of my challenges with healthcare access.  It was difficult for me to find a doctor and I was often turned away due to the type of insurance I had.  Over the course of my journey it has been an up and down battle of dealing with the policy and procedures set by my insurance providers.  I've often felt like I had to prove how sick I was in order to receive quality care, medications and treatments. All of these factors have created unbearable levels of stress and disappointment in my battle with Crohn's disease.

Crohn's has had a significant impact on my life for a long time. I am truly blessed to still be here 25 years later after 7 surgeries and a permanent colostomy that saved my life.  Many don't understand what my daily life consists of or the silent battles that I have to fight.  One of the most important things I have learned is how to advocate for myself in every aspect of my life.  This is not something that I was aware of or understood how to do early on, because I was young and felt defeated by my disease.   Living with a chronic illness impacts a person’s physical and mental health.  The battle is never-ending and speaking up for yourself is the only way to ensure that your needs are being met. 

My story gives light to what others see as an invisible disease. My passion has allowed me to elevate my voice and push forward in my purpose to help encourage others that no matter what life throws your way you can persevere and gain strength through your battles. 

My Motivation and Inspiration

MY VOICE GIVES POWER AND VISIBILITY TO WHAT IS INVISIBLE. IT IS THE DRIVING FORCE IN MY ADVOCACY TO BRING CHANGE AND HELP OTHERS.

Share This Story

Share on facebook
Share on twitter

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.