Life May Be Difficult, but We’ve Got This

Families who live with chronic illness have quickly learned to place trust in medical teams to determine the best course of action. If doctors and nurses suggest we quarantine, we may not like it, but we follow the guidelines, believing that the prescribed course of action will deliver the best results.

We trust those who provide a road map to better health and overall wellness. Chances are those who provide a treatment plan have expert knowledge in the field. Their suggestions for the next steps stem from years of acquiring data over a long period.

In my home, I am very skeptical of those without a medical degree who attempt to provide me with direction on the path of caring for my family. I trust the science, and if those who are experts in the field tell me to continue to isolate, I listen. I may not like it, but I trust their expertise in the area.

When treating hemophilia, my wife and I do not go to a dermatologist. We listen to the mighty men and women who make up our healthcare team. These specialists know what it takes to treat bleeds and provide ways to improve the quality of life for my sons.

Why shouldn’t we listen to the leading physicians in infectious diseases when addressing COVID-19? Their prime area of research and guidance makes their voices the most qualified when providing information about how to best approach plans to stop the spread of this horrible virus. They know the possibilities of contagion if we open the country up too early.

I question the viability of those who have no clue what it is like to live with a catastrophic illness. Every medical issue does not get better. Each person is unique unto themselves, and we must listen to those who provide the most accurate information.

I am grateful to be a part of a community that listens to doctors and understands that the real solutions come from those who study and provide well-thought-out scientific information. We know how to follow the directions of specialists in the field. Our eyes focus on gathering the best information possible to project the best outcomes regarding the health of our loved ones.

This approach is not a foreign concept to us, because we have followed directions from leaders in our respective fields for years. Let us continue the journey and model for the rest of the world how best to manage an unexpected medical health crisis.

Meanwhile, I encourage everyone to look beyond a cage that we create in isolation. Are we focused on our limitations, or do we allow the possibilities of new experiences to captivate us? Is there a hobby that you enjoy doing that you can experience while in isolation? How can you bond with other family members in your home?

I experience more happy hours with different friend groups than I do in the real world. I find connection and joy sitting and visiting with people important to me. We share our frustrations and our happiness in coming together, despite being in different places.

In all our conversations, there is a sense of hope. We believe that our online happy hours eventually will fade, and we will celebrate together, in person. Further discussion includes the reality that sequestered life will not continue, and a new normal may surprise us with ways of being connected like never before.

Because of our journey, we understand what it is like to have a medical diagnosis knock us to our knees. The thing that separates us from those who do not experience chronic illness is that we know how to pick ourselves back up and thrive. Stay safe my friends, and always remember that you are a blessing to others.

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Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.