My Journey With Sickle Cell Disease & The Importance Of Advocacy - Care+Wear

My Journey With Sickle Cell Disease & The Importance Of Advocacy

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My Journey With Sickle Cell DiseaseAbout the Author: My name is Georgina Dauda, I’m 27 years old living in the smallest state in the U.S. (Rhode Island). I grew up in a big family that includes my parents, three younger brothers & an older sister. I currently work as a Sr. Clinical Therapist in a mental health setting. My long-term goal is to work in a Sickle Cell related healthcare setting as a medical social worker.

Road to Diagnosis

I was diagnosed with Sickle Cell Disease (Type SS) at the age of 6. My journey to becoming diagnosed is truly a crazy story. I was born in West Africa (Liberia) and lived with my parents and older sister. At the earliest stage of my life, I became so ill that I almost didn’t make it. My family and I weren’t rich and we struggled; part of that struggle was getting access to medications, doctors, and anything healthcare-related. Over the years I continued getting sick with episodes of pain and other symptoms. My parents had no idea what was going on with me; the best my family could do was pray and use natural remedies.

During the Liberian Civil War, my country was torn upside down. American doctors and other aid came in to help. I got really sick one day and my parents sought help from those doctors. My parents were told by one that I may have this illness called Sickle Cell. Fast forward, my dad won the lottery for an opportunity to live in America. He worked hard and made a way for my mother to join him in America as well. Once they were situated with their own place to live and a stable job, they were able to bring my sister and I. At age 6, I arrived to join my family and start my new life. Shortly after, my parents had my baby brother, who was diagnosed with Sickle Cell at birth. Through his doctor, I was able to become officially diagnosed and start treatment.

The Physical and Emotional Impacts

Over the years, I’ve dealt with excruciating chronic pain episodes, intensive ER visits, and long hospitalizations due to Sickle Cell complications. I take a hand full of medications on a daily basis, each with their own side effects. I miss out on social events and outings due to symptoms flaring up out of nowhere. The pain I experience is so debilitating that sometimes all I can do is cry and hope I get some relief soon. In addition to the physical pain, I’ve struggled with my mental health. I dealt with depression silently throughout my childhood and young adulthood. I finally took initiative to seek therapy during college after a close friend passed away from Sickle Cell; I was dealing with grief, hopelessness, and anxiety.

Therapy has helped me tremendously and continues to help me get through a lot of emotional barriers. Living with Sickle Cell is exhausting; I wake up fatigued, in pain, and mentally drained. Regardless of this, I push myself to get up out of bed and start my day. Some days are harder than others but I tell myself I have to keep fighting. I can’t give up and let the world go on without me because I have goals I want to achieve and a life I want to live fully! Despite having Sickle Cell I have achieved great things already that I once thought were impossible. I graduated high school, went to college, and graduated with a B.S degree. I got into a graduate program and got my Masters’s degree in Clinical Social Work, and now I’m a Licensed Clinical Social Worker currently working for Lifespan. This journey was nowhere near easy. There were a lot of bumps in the road and obstacles to overcome BUT I’m building the life I’ve always dreamed of. 

It Can Be Difficult, But Don’t Give Up

My advice to those living with Sickle Disease or any chronic illness is to never give up and take care of your body and mind. Giving up means you decided to let that illness win. Giving up means you’re not deserving of a beautiful life. Do NOT give up! You were chosen to carry this weight on your shoulders because you are STRONG enough to make the journey! We often think to ourselves “why me?” and maybe even feel bad for ourselves. Those thoughts and feelings stray us away from living in the present moment and making the best of things. I’ve learned and I’m still learning to keep pushing forward no matter the obstacle. What helps motivate me to keep going is when I look back at all the things I’ve experienced in life so far, all that I’ve accomplished, and all the memories I’ve created with those I love. There are so many more experiences to live and memories to be made! In order to do that taking care of your body and mind is important.

It’s important to follow your health regimen and stay consistent with caring for your health by taking your medications appropriately and attending your appointments. When I was younger I would struggle with taking my medications which did not help my situation in any way. I learned the importance of being responsible and doing the necessary things I have control over that can better my health. Self-care is important as well; taking time to rest & relax relieves the body from stress. In a lot of our cases, stress triggers our symptoms. I used to be the person who would push myself beyond my limit because I wanted to prove I can do anything despite my illness. However, I learned I wasn’t bettering my health in any way; in fact, I was making things worse. Listening to our bodies when it needs to recharge is necessary so we don’t overwork ourselves and end up in worse health outcomes like hospitalization. My favorite things to do that help me recharge are listening to music, taking a nap, doing my skincare routine, taking a hot shower or bubble bath, and lighting a candle.

The Importance of Advocacy

Advocacy is very important with any worldwide issue. I make it my mission to advocate on behalf of my Sickle Cell community because we are often forgotten among other illnesses such as cancer. Although the advances in Sickle Cell research and recognition has increased over the years, our community still struggles as a whole. Because Sickle Cell is predominantly found in African-Americans, there is a lot of stigma placed on patients within healthcare systems on a daily basis. For example, many patients have been called drug seekers or have not been believed when they report having pain. I have personally been a victim of these issues and continue to be at times. This is why I speak up and educate those about Sickle Cell whenever I can. I want to change the stigma and create a more unified healthcare system for my community. I chose a career in mental health and healthcare to bring my expertise, knowledge, and experiences to those working with sickle cell patients and other patients out there living with a chronic illness.

 

If you are looking for more resources and support surrounding chronic illness, check out our other blogs:

How has living with sickle cell disease or another chronic health condition impacted your life? Let us know in the comments or share your story with us here. We love hearing from our community members!

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