Embracing the Cycles of Life When Living With a Chronic Illness

One of my favorite musicals is “Into the Woods,” with a book by James Lapine and music and lyrics by Stephen Sondheim. One of its roles that I wish I could perform is the Baker, but that’s for another time.

In the show, the woods serve as a place where we must face giants, a metaphor for other issues that we must confront to move forward in life. Sometimes we can go in, handle our business, and get out, while other times, we must stay for extended periods to face the worst of our demons.

Going into the woods to battle sounds like my journey as a caregiver to my sons with bleeding disorders. There are moments when we must handle a bleed, and after one dose of factor VIII, all is well, and we leave to continue our daily business. Other times, we must stay and launch an all-out attack on a bleeding episode that never seems to end. Finally, we look through the forest’s darkness and feel like giving up, but we fight to continue our battle.

Eventually, my family overcomes our struggles and leaves the woods to embrace a new way of being in the world. Each venture into the unknown teaches us something about who we are. The main lesson I learn repeatedly is patience during the roughest of circumstances. Hemophilia often forces me to enter the woods, even though I don’t want to go into the darkness.

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For me, long bouts of time in the hospital prove the blackest as chaos frequently rears its ugly head. I often struggle to find stability when balancing the demands of a hospital stay with managing the other roles that I play. While the churches I serve support my family when faced with medical needs, I’m still the pastor. The work of the ministry never stops, and I must continue to address the many issues that arise in my parishioners’ lives.

Sometimes, losing sight of loved ones in the darkest places is easy. Holding on to those we hold dear is not easy, as the blackness of managing a bleed that continues for days, sometimes weeks, has our attention and blinds us to our connection with other family members. Losing sight of loved ones brings a sense of loneliness and isolation. I often feel frozen and disassociated with those closest to me. I want the chaos to stop, so I can leave the cruddy woods and get back to “normal.”

I try to control the pain by attempting to set a limit on how long I need to stay and fight. Unfortunately, this comes at a high emotional price, as denying that the struggle continues only leads to further distance from my loved ones.

One of the many lessons learned in entering the woods of chronic illness is to find pockets of respite. Connecting with close friends and family in a few moments is easy. Allowing oneself to feel vulnerable and express feelings of frustration and anger gives others an idea of how help to us through a difficult situation.

I must remember that, even when I need to enter the woods, I don’t have to do it alone. Friends and relatives rally around my family. All I have to do is stand up and say that I need help.

The greatest lesson I learn is that, after each journey into the woods of chronic illness, I come away with new lessons about myself and my family. I realize that a great depth of strength lies within me to slay the giants and witches of hemophilia while moving through the woods. Likewise, my family stands together, more vital than ever, with the assurance that we can overcome anything that stands in our way, even the complications of a bleeding disorder.

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, and are intended to spark discussion about issues pertaining to hemophilia.