Sickle Cell Disease Is an Inseparable Part of My Identity

Many people with chronic illnesses may agree with a common statement that “our illnesses do not define us.” I understand that some believe their illnesses don’t change who they are. They can still live a meaningful, successful, and fulfilling life despite dealing with an illness.

However, I disagree with that quote. I don’t see my diagnosis as something separate from me. It is as much a part of me as my eyes, my hands, or my feet. Sickle cell is real, and I believe that failing to fully acknowledge the impact it has on my life discredits how amazing I am.

Do you know how hard it is to have sickle cell disease and still do everything I do? I deserve the credit, just like everyone else with sickle cell.

Don’t get me wrong. I don’t like having it, but if I had the choice to start life again without it, I would choose to have it. The life I have now has been significantly affected by my health, both negatively and positively. However, I believe the good has outweighed the bad.

I have been able to meet and influence so many people. I also have been given opportunities I otherwise wouldn’t have had. I have learned so much about how the body works, and I am more aware of what my body needs to be as healthy as it can be.

Sickle cell is an inherited condition, meaning I’ve had it since birth. Life with sickle cell is all I have ever known. I’ve been learning to make life with it work from the beginning, because I had no other option.

Whenever I’ve become too laid-back about my care, I’ve experienced serious health repercussions, so I’ve learned the hard way that either I do what I can or suffer the potential consequences. In my opinion, the former sounds way better.

I believe that acknowledging the presence sickle cell disease has in my life allows me to be more realistic with my plans, and I allow myself to accommodate my health needs. If I go about life without paying attention to those needs, eventually, something will have to give, and I doubt I’d be happy with the result.

As a subject that’s almost taboo, sickle cell disease isn’t frequently discussed in our various communities. In many countries, people with sickle cell are discriminated against because of their health. Consequently, people with it tend to avoid talking openly about it. I admit I used to be the same way.

When I was younger, I was taught that people should only learn about my health if they needed to, such as immediate family members, healthcare professionals, and close friends. Many people with sickle cell disease have had similar experiences, so it’s understandable that we would want to suppress it and deny the effects it has on our lives.

Over the years, I have become more accepting of it, and more vocal about my health and the positive and negative experiences in my life, in order to raise awareness.

I believe I can use my life experiences to show that not everything is doom and gloom. I want to inspire others with sickle cell disease by showing them that everything can be done while dealing with this condition. I want to show them that it is OK, dare I say even good, to acknowledge sickle cell disease and increase awareness about it.

To other sickle cell patients: Please don’t look down on your condition. Enough people already do that. Instead, whenever you are faced with a challenge, think of it as a way to prove to yourself that you can succeed while dealing with challenges. Don’t think of yourself as any less, think of yourself as so much more!

***

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.