Living with chronic illness is quite the journey! It’s not something that happens to you once, but a world that keeps changing over time. It can be tough for our healthy and able-bodied Friends in the Fight to understand what it’s like. Mighty Well was created for patients, by patients, but it is also our mission to build positive relationships with the people in our lives who want to understand! Storytelling allows people to create connections with lives unlike our own.
Today we connected with Destiny about her experience as a Multiple Sclerosis warrior:
Tell us a little about yourself
I am a 24-year-old African American woman living with multiple sclerosis. I was diagnosed on October 10th, 2018.
What was your diagnosis story like?
I went out on a random night in May 2018, and after that everything went left. My stomach started to hurt, but it was a feeling that I have never felt before. I was thinking, do I have food poisoning? I went to the hospital three nights in a row; the pain was unbearable. I didn’t understand what was going on, and every time I went to the hospital, they thought I was crazy because I kept telling them that I was in pain, but they didn’t understand why. They sent me home every night and all I did was cry because no one knew how I felt. I knew something wasn’t right. I finally did my research and found a gastroenterologist. He helped me in the best way that he could and recommended that I take probiotics. A few days later I had to call my gastroenterologist because I could not sleep or walk due to the pain. I went back to the hospital was able to have an endoscopy that day. They found a small amount of bacteria but I was reassured that it was nothing to be alarmed about and was advised to continue taking probiotics. After that I was referred to see a neurologist, who ordered steroids for me because I was also now having problems with numbness and tingling in my hands and feet. We all just thought maybe this could be food poisoning, but we really weren’t sure.
A few months later, it was a normal day at work, and out of nowhere my right eye felt weird and a little blurry but I thought to myself, maybe I’m just tired. The next day my vision was very blurry, and I knew that I needed to make an appointment. The eye test stated that the vision in my right eye was completely gone. He told me that this could possibly be Multiple Sclerosis and I should make an appointment with a neurologist as soon as possible. He ordered an MRI and more steroids which ended up bringing my vision back.
How did it feel to get the diagnosis?
The nurse called me while I was at work and stated that I needed to come to the office the next day. I begged her to tell me why, but she couldn’t. As soon as I hung up the phone with the nurse, I called my mother and we talked on the phone and prayed the whole night. The next morning, we went to the office together and sat there holding hands, waiting for an answer. My neurologist walked in and broke the news to us stating that I had Multiple sclerosis. My mother and I were in the state of shock and cried. My first thought was that I would never be able to walk again.
That was the beginning of my new life.
How has MS impacted your life?
I am currently taking the medication Ocrevus through IV every six months. This journey has been scary, but also made me a stronger woman. I was given this battle and I will share my story so that I can help anyone who may feel alone, discouraged, hopeless, and also to encourage anyone. I have MS, but MS doesn’t have me. I am very grateful to have a group of supportive people around me, and blessed to have my mother who has been at every doctor’s appointment, joined a support group, and does research every single day.
What advice do you have for someone with a new diagnosis?
It took me almost two years to share my story. I was afraid of being treated differently because of my new changes. But, I remembered that no matter what not everyone will accept you or understand you, and that’s okay. Just make sure you accept and love yourself. If you are going through anything please don’t be afraid to talk about It, or ask for help. #wegotthis🧡
Do you have a story you would like to share? Join the Friends in the Fight facebook group!