We were lucky to catch up with Nicole Watson recently and have shared our conversation below.
Alright, Nicole thanks for taking the time to share your stories and insights with us today. Was there a moment in your career that meaningfully altered your trajectory? If so, we’d love to hear the backstory.
I’ve experienced many defining moments in life, but the one that led me to discover my purpose was understanding the power in my voice. I was 16 yrs old when life threw me into one of my darkest moments to understand and navigate through. My body was being attacked and nothing seemed to be helping me fight against the uncontrollable symptoms that I was facing on a daily basis. Nothing I ate would stay down, and my body was growing weaker physically and mentally each day. The doctors couldn’t figure out what was going on, because this wasn’t your typical infection. Finally, after several tests and procedures the Gastroenterologist diagnosed me with a complex form of inflammatory bowel disease called Crohn’s. I had never heard of this disease and the only thing that really stuck out to me during the conversation was there is no cure for this disease, so I would have it for the rest of my life. What do you mean? This was my response and probably one of the last few things I uttered before letting the depths of a disease that attacks the lining of your digestive tract without warning control the next phase of my life. The chronic symptoms of living with Crohn’s was taking control over my body and I didn’t know how to manage the hurdles of abdominal pain, diarrhea, weight loss, fatigue, and still try to act like a normal teen finishing my last years of High School or the recent death of my father all at the same time. Imagine being put on the world’s largest roller coaster by yourself! That’s what I felt like and there were limited resources for me to use during this time. The doctors were only helpful to a certain extent due to the recent changes of how this disease was presenting itself and the data available to aid in helping younger African American patients life myself. As time progressed so did my disease and I found myself slowly drifting further into isolation from feeling alone. Yes, I had the support of my mother and a few close family members, but many didn’t even know what I was dealing with because my symptoms didn’t present the internal damage for others to see. The only time I really was asked questions were when people would notice the amount of weight I was losing being that I was relatively on the curvy side before this journey began. However, I still never gave much detail and would cut those conversations short quickly. I tried my best to keep the smile and mask my true feelings, but as time grew so did my anger and frustration.
I grew up learning the importance of God and prayer, but in that moment my questions towards God didn’t feel like they were being answered. I felt like this was a punishment and I couldn’t figure out why or what had placed this darkness into my life. I still prayed and continued to isolate myself too. The doctor visits felt like an experiment and the medications wouldn’t even stay down when I took them. Life continued to spiral out of control from one extreme to the next and I was tired of feeling sick every day with no solutions. I started fighting back and I kept fight to gain some control back from all that my disease had took from me. The more I fought the harder my disease attacked me and the scars started to surface, but I kept fighting. I didn’t fight alone though and this is where I know God heard every prayer I’ve ever spoken. The “NO’s” were loud all around me and even within me, but God was right behind declaring my next “YES”! I was determined to grow in my Faith and relationship with God to help me shift my perspective and that meant learning how to use my voice to communicate with Him.
My voice became my resource and I started sifting through my depression, anger, grief, acceptance, low self-esteem, sadness, and all the layers of my journey to advocate for myself. One of the hardest parts was accepting my diagnosis and not feeling like it was a punishment placed on my life.
My testimony was growing and I wanted to break free of the survival mode to start living in my purpose. I didn’t want God’s miracles in my life to go unseen or unheard. I didn’t want other patients like myself or anyone else to feel like Life’s challenges or situations have to define us and diminish our worth and power to thrive forward. I thought I was the only black person living with this disease for so long and I wanted my voice to be a light of inspiration to everyone I was connecting with to help make the invisible become visible by sharing my story to empower others. I made a commitment to Believe In Myself and to use my voice even if it shakes. Finding my voice has allowed me to not just grow in my own journey, but to help others do the same. My voice has helped me see beyond what some deem as impossible or limited because of my health challenges, age race, and gender. My voice has helped build connections and honor the value of every patient’s voice to feel included by advocating in and out of our communities to break the stigmas and disparities that continue to keep equity and diversity from being a priority around the world. My voice helped me to be where I am today, and to be the voice for others that come behind me, and those around me who are still learning to lift the power within them to speak light into their life and the lives of others.
Nicole, before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?
We often hear the phrase “what you don’t know want hurt you”, but how true is that if we honestly think about the outcome of how that phrase has played out in life? I disagree, and I say that because our feelings and reactions play a part in how we navigate through different situations with or without knowing about what it is. There are so many stigmas and disparities from not having the resources, education, and support to shift the negative environment that has been created. I idea that it can’t or won’t happen is constantly being misinformed especially when it comes to our health. The lack of resources and information when I was diagnosed in 1996 with Crohn’s disease due to the previous disease factors presented several challenges and still are today even with the advancement of treatment in this disease space. I lived in isolation from not knowing and feeling hurt from the damage of living with a chronic disease that attacks your body internally and externally at any given moment. Finding my voice has allowed me to actively become a Patient Advocate by sharing the highs and lows of my journey. The transparency and vulnerability has not always been easy to share, but neither has living with this debilitating disease. My advocacy work has allowed me to grow in my own journey too. I don’t feel alone or unheard when I share my experiences. I’ve been invited to share my voice in spaces with my colleague advocates, doctors, community organizations, pharmaceutical companies, many other leaders to help be a link in the chain for change in our communities. I am proud of all the advocacy work that I do! In 2018, my disease shifted dramatically and left me to having emergency ostomy surgery that saved my life. A year later, I had four additional surgeries and doctors didn’t think I would make it through, but God declared another victory on my life that the doctors called “A Miracle”! My bag may collect the waste from what I consume, but it is far from a waste of the time gives me to still be a mom and living a purposeful life. Being a mom is also one of my proudest moments, especially after having a miscarriage and being told my disease would prevent me from having children, but God had the final say on that too!
I recently became an Ostomy Model and I really didn’t see this being in my path, but there was a gentle nudge of empowerment that is greatly appreciated. Support is not something I take lightly, and find crucial for our toolbox in life. You can catch me in front of a camera for a selfie, photoshoot, or even the runway with and without my ostomy bag that I named Lil “O”. When I’m not modeling it’s still my pleasure to model the best positive and authentic person I am to others in the ostomy community to not let this life changing situation stop them from Living. I believe all of our stories have the power to help others and I know quite a few people’s story who have helped me with my own. My goal is to Inspire, Impact, and Improve the way we communicate with ourselves and those around us to persevere through life. The beauty of it all is knowing that when I’m not at my best there is a village that I can turn to for love, light, and encouragement. The Light Always Returns!
Learning and unlearning are both critical parts of growth – can you share a story of a time when you had to unlearn a lesson?
One of the biggest lessons I had to unlearn was pouring from an empty cup. I’ve had to actually relearn it a time or two cause I’m still a work in progress. I got comfortable wearing my mask to hide my own pain and deal with my own situation that I fueled myself by pouring into others. I later realized the only person who wasn’t getting my attention was me. I used to feel that having a giving heart is a gift and a curse. I’ve rephrased that to understand that I can still have a giving heart and create boundaries of how to give it to others, including myself. Learning how to shift my perspective on things has helped me not dive off the deep end before taking the steps to walk through it. My earlier years of isolation was mainly from fear and doubt in my own ability to live with my disease. I didn’t want to accept that this was now part of my story. I also didn’t want to accept that I didn’t have control of life during that time either. What others saw as strong was not what I felt and it made me feel even more alone, because the strong ones are often overlooked and misunderstood in their strengths. People only saw what I presented and that was not the tears of pain I cried before leaving out the house or the night before. I didn’t want to disappoint others and that sometimes came at a cost of my own pain. If there was a drop left in my cup it was gonna be given to someone and that became my norm. I realized accepting my disease was long overdue and that I didn’t have to keep living behind a mask. I had to start healing by pouring into myself all the things that I was giving others like time, love, forgiveness, and accepting who I am despite of the many experiences life was presenting.
Other than training/knowledge, what do you think is most helpful for succeeding in your field?
My faith in God, believing in myself, and my village of support is all part of my success. We are not created to navigate life alone. My faith has allowed me to grow and discover the gifts that are placed within me. I know God’s promises have got me to where I am today! When you make the commitment to honor the presence of who you are it takes accountability, acceptance, patience, forgiveness, love, discipline, support, vulnerability, transparency, and grace. We are created and declared worthy to have a purposeful life if we believe in our creator and in ourselves. The light within us is not our own and as we thrive throughout life it’s our responsibility to share the light in every way we can. The relationships and connections may not be permanent, but they have the potential to take us further forward than backwards. Sometimes we can’t see what’s in front of us or be present in the moment from being in our own way. It’s okay to step to the side and let someone step in to show you another way. The art of picking and choosing our battles to succeed is not easy, but you can allow yourself some grace and create the space to shift away from the picture perfect ideas that we sometimes create. We don’t have to race against the clock; show up as best as you can each day and believe that success starts with You!
Contact Info:
- Instagram: @nickyrene3
- Facebook: Nicky Rene
- Other: Email: [email protected]
Image Credits
Clutch.Ent.Photos – William Ford JPix Studio Photography