My Silent Struggles: Living with Sickle Cell Disease
Published on:
July 26, 2023
What have you been diagnosed with?
I have been diagnosed with Sickle Cell Disease at birth.
How did you first notice something was wrong with your health?
Sickle Cell Disease is typically diagnosed at birth, though some don't find out until later in life. I had my first sickle cell pain crisis at the age of two and have been in the fight of my life since then. You never get used to having a chronic illness; you just have to keep adjusting, which is what I do daily.
When did you first start experiencing symptoms?
At the age of two, I had my first sickle cell pain crisis. My mom always said that in the moment, it didn't cross her mind that it was sickle cell pain until it became a constant and more intense cry, showing that I was in pain. She rushed me to the hospital and got me taken care of.
How did you go about seeking a diagnosis?
With sickle cell being an inherited disease, it means that both parents carry the sickle cell trait or, in other terms, Hemoglobin S. There is a 25% chance that the children they produce will have sickle cell disease because of it. This information is normally shared with sets of parents who carry the sickle cell trait because of the likelihood of having a child with sickle cell disease. My parents were both aware of the risks and decided to still have five children, of which three have the sickle cell trait. One went through a bone marrow transplant which rejected, so he reverted back to having sickle cell, and then there is me with sickle cell disease as well.
How long did it take for you to receive a diagnosis?
For me, it was known at birth, as there is a 1 in 4 chance of having a child with sickle cell disease when both parents carry the sickle cell trait. Blood tests were run, and with me being the fifth child, it was inevitable, as well as for my brother who is number four.
How did you feel when you received your diagnosis?
Since I was diagnosed at birth, my childhood looked different, of course, and with that, I did have to grow up a lot faster, which felt odd at times. I knew I had a lot of limitations and a lot to be careful and cautious about, and though I missed out on a lot in life, it was ultimately for my own good.
How did you communicate your diagnosis with your loved ones?
My parents always taught me at an early age how to advocate for myself and speak up, which I thank them for. When I was younger, I definitely would let my parents know when I was in pain so that they could best help me. I relied on them quite a lot growing up as it was overwhelming from all the pains and constant doctor appointments. I appreciate them being proactive and teaching me how to communicate my wants and needs.
What treatments have you undergone, and how have they impacted you?
I've had many blood transfusions in my life as they have been needed to help me have fresh blood cells to combat my sickled cells, which cause me all the pain. I remember being younger and having to go frequently in the colder months to get blood transfusions because a change in temperature is a trigger for me and my pain, so I always needed that extra care. I've had a blood exchange before, I believe once or twice, which essentially takes out my sickled cells in exchange for healthier round blood cells. These treatments have impacted me for the better, and I am thankful to those who can donate blood as they are saving so many lives.
What is the most difficult part of your treatment, and how do you manage it?
The most difficult part of trying so many things to help treat or minimize the symptoms of sickle cell disease is that most of what we try just doesn't work or isn't enough. It's daunting to fight and try to treat both the physical and mental aspects of it all. It becomes frustrating as you get older, facing so many other symptoms while still trying to deal with the ones you already have. I just try my best to take my daily meds, use my heating pad to help ease the pain, cope as best I can, have self-care days, and listen to my body along the way.
What has been the most challenging aspect of living with your condition?
The most challenging aspect of living with my condition is the inevitability of it. Sickle cell is a beast. Getting up every day is truly a fight in itself. You can be doing everything right, and yet the pain can still come and wreak havoc that is excruciating and indescribable. As I've gotten older, the chronic fatigue associated with sickle cell has also been a huge barrier for me, and it's not visible to others because I look "fine," but I am always so drained.
“It's sad to be in a body that seemingly feels like it's working against me, when it's truly trying to fight so hard for me.”
How has your daily life and routine been affected by your condition?
My daily life and routines always depend on sickle cell. I can never just get up and go, as I have to wake up and do a body check to see if I have any pain or aches. With my body functioning at one stagnant energy level, it becomes hard to do daily tasks as I always need breaks from even the simplest things. Over-exertion is a trigger for us with sickle cell, so we must always be cautious about what we do, how much we do, and taking breaks is essential.
How has your condition affected your mental health and emotional well-being?
Sickle cell weighs heavily on my mind and mental health. It's sad to be in a body that seemingly feels like it's working against me, when it's truly trying to fight so hard for me, though it doesn't feel like it. Coming to terms with "this is really my life" can be very daunting. I haven't been clinically diagnosed with depression, but I have experienced periods of depression and lows in dealing with sickle cell. Some days I can fight back, while other days I can't. On those days when I can't fight, I allow myself to feel everything I need to and have a much-needed cry.
What strategies have you found helpful for managing your emotions and thoughts?
Some strategies that have been helpful in managing my emotions include writing. I've always found great solace in it since I was younger. I also like to give myself alone time away from others to help me regroup and center myself. When the overthinking and fearful thoughts become overwhelming, I listen to my happy music playlist or gospel music that soothes me in those moments.
How has your diagnosis impacted your relationships with your friends and family?
Having sickle cell has made my family and friends more protective of me, and they are always there to lend a helping hand, which I greatly appreciate.
What support systems have been helpful during your health journey?
The support systems that have been helpful are my fellow sickle cell warriors that I've met through social media. They are so special to me, and I love them dearly. I also enjoy being a part of a SC community chat on Facebook, which is a great place for all of us to ask those questions we may not feel comfortable asking elsewhere. I also have some great people around me who are always there for me, and I am there for them as well.
What advice would you give to someone who has recently been diagnosed with your condition?
The advice I would give to someone who may not have been diagnosed at birth and found out later, is that your life isn't over, and you are capable of living a life you can be proud of, even though it may look different from others.
What advice would you give to your past self if you had the opportunity to go back in time?
I have so much advice to give my younger self, but if I had the opportunity to go back in time, the one thing I would say is that; you are going to achieve great things and overcome every obstacle thrown your way.
How can others be more supportive and understanding of people with your condition?
I feel that others can be more supportive and understanding of people with sickle cell by truly educating themselves. There is so much misinformation, lack of education, and textbook versions being taught that are far from reality. I believe that if people really took the time to not only learn but also listen to those of us who live with sickle cell, there would be less social stigma.
Looking for support and resources as a fellow Sickle Cell Disease warrior? Click here.
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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.
