Unstoppable: How Jessica Reid Has Redefined Success While Navigating Society With Sarcoidosis

Posted on

People with physical limitations value empathy versus sympathy. People need to understand there is a difference. Sympathy involves understanding from your own perspective. Empathy involves putting yourself in the other person’s shoes and understanding WHY they may have these particular feelings. We don’t want anyone feeling sorry for us or having pity on us. However, when people empathize with us, it creates a bridge and more space for genuine healing, understanding, and compassion.

As a part of our “Unstoppable” series, I had the pleasure of interviewing Jessica Reid.

Jessica is a 19-year neurosarcoidosis survivor, a Registered Nurse, and recent Family Nurse Practitioner (FNP) graduate. She has an unstoppable spirit and thoroughly enjoys learning something new every day. Advocating on her own behalf to her healthcare team is second nature. She enjoys the opportunity to teach others to do the same. One fun fact about Jessica is that she is a licensed nail technician and aspires to combine her professions in the near future to continue to joyfully serve others. Just as she refused to allow neurosarcoidosis to stop her from obtaining her Bachelor and Master of Science in Nursing degrees, Jessica aspires to persevere and achieve her Doctor of Nursing Practice (DNP) degree within the next 5 years.

Jessica was born and raised in North Carolina and currently resides in the Triangle Area with her husband, daughter and son. In her spare time, she enjoys volunteering with the Foundation for Sarcoidosis Research (FSR), serving in her church, exercising, reading, journaling, listening to music, and spending quality time with family and friends.

Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?

From the time I was old enough to participate in playing sports, particularly basketball, I was always very active and what one would consider as “healthy.” Not only did I have fun competing with others, but I formed lifelong friendships playing sports. At one point, I was playing basketball and taking dance lessons at the same time. Surprisingly, I played 3 sports during my high school years, which included volleyball, basketball and outdoor track and field. As I am sure some athletes can relate, being physically active year-round provided me with an outlet from family or home problems, as I consistently remained an A-student.

After beginning college, I continued to play recreational basketball and enjoyed running through campus in my spare time. Doing so then helped to relieve any type of stress or anxiety I experienced in college. As a vibrant sophomore college student, I never thought twice about my health. My attention was focused on “living the dream” so to speak, working diligently to graduate early as a Physical Therapy student and dating the love of my life (my husband today). Then suddenly, I began to experience severe low back pain which caused me to believe that something was wrong because I had never felt that before. My doctor thought I pulled a back muscle since I was so very active and ran a lot around campus in my leisure. However, not only did the pain continue off and on, it also progressively worsened to the point that I was unable to lie flat to sleep. Instead, I had to sleep sitting upright with my back against the footboard of my bed.

Fast forward, I decided to take some time away from college, after welcoming our first child, Errika, and getting married. About 3 months after our daughter was born, the back pain returned but was much worse than the first time around. This time the pain started in my lower back, radiated down my buttocks and the front of my thighs. From my knees down to my feet, all I could feel was numbness and a tingling sensation. Along with these symptoms, I had to strain to urinate and have a bowel movement, which was very frightening and frustrating! As a matter of fact, on the night of our wedding, I was in the ER and had an MRI performed. I vividly recall the phone call the following day which changed my life drastically!

Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?

Yes. The phone call after my MRI was to inform me there was a tumor on my lower spine. Immediately, my first thought was cancer! I underwent a laminectomy or back surgery, and the neurosurgeon confirmed my greatest fear. He said the tumor on my spine was a lymphoma. Following surgery, I had to lie completely still on my back in the ICU for 24 hours. I could not sleep that night because all I could think about was after being married less than 2 months, my husband would soon be a widower and our baby girl would not get a chance to know her mother.

The providers ordered so many tests and exams that I felt like a lab rat with no answers to explain my symptoms! The worst procedure I underwent was a bone marrow biopsy which gave no answers either! With no clear diagnosis, the providers still proceeded to transfer me to the Oncology Unit and I remained hospitalized for 6 days total. On the sixth day, I was discharged with a diagnosis of tuberculosis after the providers reviewed the gram stains. I completed the course of TB treatment and began running again once my neurosurgeon cleared me, because we both thought I was cured! Not to mention how young I was! However, on the very next day after running 1 mile, I woke up with that FAMILIAR excruciating back pain and immediately phoned my neurosurgeon. That is when he referred me to Rheumatology. I had a bronchoscopy done due to the small lung nodules noted on my chest X-ray, and it confirmed Sarcoidosis. I thought to myself, “Finally a diagnosis! But, wait….what is Sarcoidosis?” After asking questions, the only 2 words I heard the Rheumatologist say was, “NO CURE!” I was placed on a high dose of prednisone and in a few months, I felt like myself again and I was weaned off the steroids.

My life felt normal again. I enrolled back in college and completed my Bachelor of Science in Nursing degree. In August of my senior year of nursing school, I gave birth to our son, Errik Jr. Almost 3 months later, I had a grand mal seizure for the first time while sitting in the main lobby of Duke University Medical Center. I was there because my father had a benign brain tumor scheduled for removal the next day. I took a week off from nursing school to support and help my mother care for him, but I HAD NO IDEA I WAS ONLY PREPARING MYSELF TO BE HOSPITALIZED FOR SARCOIDOSIS IN MY BRAIN! But, God knew!

Yes, ironically, my father and I were in the same hospital, at the same time, on the same floor, but in 2 separate units. I was placed on a daily dose of 60mg of prednisone for almost 2 years and I experienced more than 10 side effects during that time. They took such physical, emotional and mental tolls on me that I was not able to care for our 2 children. I was left to depend on my husband and other family members to care for them AND ME! I became very depressed and found it very hard to even look at myself in the mirror!

As a result of Sarcoidosis being more aggressive the second time around, to this day I must empty my bladder every 2 hours with a catheter. The extent of the changes in my bodily functions, short and long-term memory loss, and limp when I walk, caused me to stop my medications 5 times! It all became too much to bear for a 27-year-old woman whose mind and body felt like that of a woman twice or triple her age! After the fifth time of stopping my meds and my husband telling me how my neurologist was disappointed in my not following my treatment plan, I made a conscious decision to TAKE BACK MY POWER FROM SARCOIDOSIS & FIGHT DAILY!

Can you tell our readers about the accomplishments you have been able to make despite your disability or illness ?

Despite the physical limitations I currently live with on a daily basis, I refused to allow “it” to cause any mental limitations which were within my control. You see, over the course of living with sarcoidosis for 19 years, I have completed not only my Bachelor of Science in Nursing degree, but also my Master of Science in Nursing degree as a Family Nurse Practitioner. Let me be clear that it was not easy by any means, but more so following my unique purpose. I thoroughly enjoy helping others and oftentimes share my personal struggles and how I overcame them for encouragement.

Also, once I realized I had accepted and embraced my health changes, I made a conscious decision to learn more about sarcoidosis and educate other patients. It was then that I searched the internet and found The Foundation for Sarcoidosis Research (FSR) at www.stopsarcoidosis.org. The Foundation for Sarcoidosis Research is the leading international organization dedicated to finding a cure for sarcoidosis and to improving care for sarcoidosis patients like myself. Since its establishment in 2000, FSR has fostered over $5 million in sarcoidosis-specific research efforts.

I joined forces with FSR to carry out their mission to increase sarcoidosis awareness by enhancing patient care and developing a cure. I proudly serve as a Patient Advocate and Navigator, and member of the Patient Speakers Bureau and Women of Color Patient Advisory Committee. Our goal is more access to qualified care and effective treatments and improving doctor patient communication.

What advice would you give to other people who have disabilities or limitations?

Do not allow whatever disability or limitation you may be currently facing to stop you from living! Notice I said living, and not doing. Your life may not look like it used to but navigate your way to finding a new normal for yourself. Just as the disability or limitation did not happen overnight, this process will also take some time. Do not be afraid to ask for help in how to do that. Be kind to yourself. Allow yourself grace to make mistakes. Cry if you must. Yell if you need to. But whatever you do, please do not give up! Find your tribe or community of support, which may include family, friends, coworkers, etc. It is important to surround yourself with a circle of individuals who accept you for you; flaws, limitations, disabilities, and all. Be comfortable advocating for your health and do not shy from asking your medical team questions. And most importantly, listen to your body. Never be afraid to say “no” and rest, even if that looks like lying on your couch.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?

You are absolutely correct! I would not be where I am today if it was not for my family. And for that I say, I am forever grateful for my family. They will forever be my tribe. My circle of support. They too have made some sacrifices. They have seen me during my highest highs and lowest lows, and never judged me. That is priceless. When I wanted to give up and throw in the towel, sure, they let me have my pity party. But they refused to let me quit. They reminded me of just how strong I am and how much I have achieved while looking neurosarcoidosis in the face daily!

How have you used your success to bring goodness to the world?

Professionally, I survived a second COVID surge and obtained my Master of Science in Nursing degree as a Family Nurse Practitioner (FNP). I am now acknowledged as an Advanced Practice Registered Nurse who specializes in the primary and specialty care of patients of all ages. In general, FNPs focus on preventive care, monitoring their long-term health, and assisting physicians with any issues that might arise. This is an extremely rewarding position, both professionally and personally, and requires a clear and compassionate communicator for all aspects of the job.

As I mentioned previously, in my spare time I serve in various roles with FSR. As a Patient Navigator, I provide one-on-one support for those newly diagnosed with sarcoidosis, in the diagnosis process, experiencing their first flare, and/or new organ manifestation. Being a member of the Patient Speakers Bureau allows me the opportunity to speak on a range of topics related to sarcoidosis, including the challenges of living with a rare, chronic, immunocompromising illness, improving patient access to qualified care and effective treatments, and improving doctor patient communication. For the first time, the Foundation for Sarcoidosis Research (FSR) launched the Ignore No More: African American Women & Sarcoidosis (AAWS) Campaign to address the disparities African American women face by engaging our sarcoidosis community — patients and providers — to better understand how sarcoidosis impacts African American women. African American women bear the greatest burden when compared to all other groups impacted by sarcoidosis. I am 1 of 15 women who serve as the patient voice of the campaign, using our lived experiences and patient advocacy training to raise awareness among African American women and providers in communities across the US.

Can you share “5 things I wish people understood or knew about people with physical limitations” and why.

  1. Physical limitations do not define us. We are humans and as humans we too have feelings. When we are asked our name, we don’t respond with the condition or limitation we are living with. Instead, we respond with the name our parents gave us at birth.
  2. Physical limitations are not always visible. There are some you cannot see from the outside. For example, with neurosarcoidosis, I suffer from some short and long term memory loss, and episodes of brain fog. One would not know this unless I shared it.
  3. Physical limitations come in all forms, shapes and sizes. One should not put us all in a box. Individually, we are unique in our own special way. This is very important in understanding who we are aside from our disability.
  4. People with physical limitations know their bodies best. Don’t tell us how we should look or feel. If we say we are tired, we are indeed just that, whether it be physical, mental, emotional or spiritual. If we say we don’t feel well or feel sick, believe us. I have had several people, even doctors tell me, “you don’t look sick.” How rude and inconsiderate! Excuse me, but what exactly does “sick” look like? We would very much rather live our life with no limits!
  5. People with physical limitations value empathy versus sympathy. People need to understand there is a difference. Sympathy involves understanding from your own perspective. Empathy involves putting yourself in the other person’s shoes and understanding WHY they may have these particular feelings. We don’t want anyone feeling sorry for us or having pity on us. However, when people empathize with us, it creates a bridge and more space for genuine healing, understanding, and compassion.

Can you please give us your favorite “Life Lesson Quote”?

Live to Love. Love to Live. Tomorrow isn’t promised, so LIVE & LOVE TODAY!”

We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂

I truly admire Michelle Obama. She is the epitome of a classy, intelligent, and puissant African American woman! She made history as the first black First Lady of the United States. She left her mark on the world. When she was ridiculed and criticized, she always responded with such eloquent words to lift us all in spirit! Michelle Obama has a distinguished way of delivering a message to everyone, regardless of race or ethnicity, in hopes of promoting positive change.

This is why I am sharing my personal journey with neurosarcoidosis. Some days are better than others, but I take the time to determine how to help others who face similar struggles. The majority of the struggle that patients face is rooted in the ignorance of others. I believe Michelle would have some great advice on how to continue to change the culture, and join me in increasing sarcoidosis awareness to enhance care and find a cure.

Please visit www.stopsarcoidosis.org to learn more about sarcoidosis, and to meet the other people who serve alongside me in carrying out FSR’s mission, including physicians, researchers, and patients/caregivers.

This was very meaningful, thank you so much. We wish you only continued success on your great work!

Unstoppable: How Jessica Reid Has Redefined Success While Navigating Society With Sarcoidosis was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.