Finding Meaning in Chronic Illness

I was born into this world with hemophilia.

As a child, it was a reality I had to face, and I have no one to blame for my misfortune. Did I want to be born? Did my parents intend that I have a different life? No. It would be wrong for me to say that hemophilia has made my life meaningless or hopeless. I’ll admit that I often feel a tinge of hopelessness, but if I look at it another way, would I have known life without having this illness? Again, the answer is no.

Philosophy has always interested me; particularly, existentialism and the search for meaning. Many great thinkers perceive the world as meaningless and believe that humans create structures to allow us to see a purpose in life. We try to apply logic to the senselessness of the world by labeling it or putting it into a box.

Our existence in this reality is random. We can’t control our destinies, so it doesn’t make sense to blame life for our misfortunes. Each of us has our own perceptions and experiences of the world. I have hemophilia; others don’t. There’s no benefit in comparing my life to theirs or seeing mine as unfair.

Hemophilia is a part of my human existence. My experience gives me a deeper understanding of life and a chance to find meaning in it. Viewing my illness as meaningless could lead me to become a pessimist who sees life as a hopeless wasteland where we merely live and die. Pessimism deprives me of the joy and the ability to savor the parts of life that I want to believe have substance.

When in pursuit of a greater or absolute good, we chase after it as we try to understand it. We make our own meaning, basing what we appreciate or perceive as good on our understanding of the world around us. If I place hemophilia in this scenario, disregarding my appreciation of my illness puts me in a tough spot. I’ll fail to see what it is and what good it’s done for me. Without my illness, I would not have tried so hard to understand who I am, nor would I have any interest in identifying what constitutes meaning for me.

Chronic illness has long been a part of my life, and I owe a great deal to this experience that has shaped me as a human being. It’s not easy to find the beauty in something that has inflicted pain on me for 25 years. Although it’s somewhat of a parasite in my body, I hope to continue to see the good in my experience.

I’m not advocating blind optimism. If I were to see only good in things, then I would be depriving myself of the ability to observe things as they are. I would blindly accept my fate and smile in the face of adversity while I cry inside. While one may lose hope and all good things may be shattered in times of hardships, that doesn’t mean that I should stop trying to understand that aspect of my life.

Despite all of the horrible beliefs I may have — I’m sickly, imperfect, and life is miserable — I keep in mind that life doesn’t have to revolve around what irks or hurts me. Everything changes — people and situations alter — and there’s no reason to believe that circumstances will stay the same.

Looking for meaning is an uphill battle, and I will surely be hurt and fall along the way. But I hope that a greater being can help me up to see the beauty in the struggle. The French philosopher Gabriel Marcel described man as “Homo viator” — a traveler in search of meaning. In this voyage called life, I hope that I can see sense and beauty in what life has given me.

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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.