September is known as the Sickle Cell Awareness Month, which is a month when we learn more about Sickle Cell Disease and the stories of the warriors who battle it every single day. Today, I am going to testify about my own life as a Sickle Cell Warrior and my experiences over the last two years. This is my testimony of my life with struggles, tears, sadness, strength, and progress in my life in spite of this disease.
In the course of the last few years, I have been dealing with crises that seem to show up every two months like clockwork. You could have set your watch to expect me at the hospital. Every crisis is different in terms of severity and effects for each person, though common for me is being admitted to the hospital for at least a week. It is always troublesome being in the hospital, but at the same time these hospital stays also have been informative and restful. I have, as a result, learned how hospitals work, how to advocate for my needs as a patient and therefore how to get through the system.
As for the nature of the crises I faced, they have shown up different from how they showed up in the past . Sometimes the pain is localized in my side and causes me a lot of trouble breathing. At other times it’s full body pain, specifically in my joints and I found it difficult to walk. I actually had to call an ambulance to drive me to the hospital because I couldn’t make it down the stairs of my third-floor apartment. There are times when I also feel very sharp chest pains to an extent that sometimes makes the nurses think that I could be having a heart attack. However, in all these instances I have been attended to by qualified, caring nurses and with the help of God I have been able to come out of the crisis. After a week in the hospital, I would just need a day or so to sleep in my own bed to recover and I would be able to carry out my everyday activities.
Luckily, the last several months have not been like that. I have not had severe crises. It is good to feel hopeful that this phase is behind me. It makes me wonder if this change is due to a drug I took over the last two years called Oxbryta, which I just stopped taking. This still leaves me thanking God for relief. And I hope this feeling persists.
The effects of Sickle Cell Disease (SCD) in my body are not easy to bear, but lately, my biggest struggle has been mental. It might come as a surprise to some, but I was comfortable during my hospital stays. The nurses and doctors all saw me being a patient and were only concerned with my welfare. I had a team of nurses taking care of all my needs; I did not have to worry, for example, if I ever needed anything, someone would bring it to me or made sure I was taken care of.
On the other hand, loneliness is quite common when a person lives on their own. I have no one that I can rely on for help for day to day activities because all the responsibility is on me. Lack of that kind of care and attention can actually make life with chronic illness even lonelier. Some of the hospital stays provided a much-needed break from that isolation to give me time to recuperate.
There were times when I was able to bring a laptop my during some of my longer hospital stays so I could continue working. I kept up with my Zoom meetings and worked on tasks—not because I am the sort of person who can’t turn it off. I did it to have something that would get my mind off of being ill. Work meant that I was able to have a routine based on something other than the illness, although briefly, every day. It gave meaning to my existence and some degree of mastery over my life no matter what.
Thinking about all that was happening to me and all the time I had to spend dealing with Sickle Cell Disease, I realized that every thing in life ebbs and flows. There are good days and there are bad days, which this condition has unfortunately made me realize. Through it all, I’ve learned invaluable lessons: methods of coping, personal care, how to advocate for myself with hospital workers, empathy and compassion for others who struggle, and the need to seek and sustain supportive relationships.
If there is one thing that I have learned over the first half of the year, it is that I am much stronger than I thought. Every time I get through a difficult period of crisis and come back to work, I realize that I had stamina. I also value the attention I get from both healthcare workers and people in general society a lot more. Over the years, I figured out how to build my support system up independently, and that is especially helpful when one has chronic illness.
For anyone who has Sickle Cell Disease or any other chronic disease, I’d like you to know that your struggles matter. What you go through on daily basis – is recognized and, yes, your journey is commendable. It is quite lonely to feel far away from people and have them not fully understand what you are going through. But know that there is always someone with you. He loves you and He cares.
Like most chronic illnesses, living with Sickle Cell Disease can sometimes be a war but there are always moments to be thankful for. There is always a pain or challenge to contend with, but we should look for the silver lining and be grateful. It could be the care of our loved ones or the expertise of our doctors or the fact that we wake up to a new day, small things do count.
Continuing the awareness we emphasize during Sickle Cell Awareness Month, it is important that we stand with one another and share our voices and experiences. The Sickle Cell treatment agenda is eager to accommodate every Sickle Cell warrior though much change still needs to take place to provide them the sort of care and necessary support they require.
So, consequently, my experience with Sickle Cell Disease is rather complex with a number of ups and downs. It’s a journey. Being a patient has taught me how to become more compassionate to myself and request better care. I’ve also been building a supportive community. I may not know what tomorrow brings but I am assured that with the help of God and my family and friends and hard work I will never stop striving and thriving.
To my fellow Sickle Cell Warriors, do not give up. We are stronger than we think and collectively we are stronger than any force that can confront and challenge us. There is always something to be thankful for and after thanking God, there is always the ability to continue.
We are stronger than we think.
Written by Simone Henry, fellow Sickle Cell Warrior and entrepreneur
We must keep on creating awareness, exercising mutual support, and depending on our communities.
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