I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual symposium. About 30 parents attended, each with their own issues regarding their children.
I sat in my chair and quickly tried to calm my nerves after feeling a fantastic responsibility to say the right things to the people in the room. Would I be able to find the words they needed to hear?
I tried to tune out the noise in my head and listen to their stories. Up to that moment, my personal experience with hemophilia was that my 8-year-old son, whom I refer to as “MacDonald the Older,” had struggled with an awful fear of needles. My younger son, “MacDonald the Younger,” didn’t arrive for another two years.
While I announced right off the bat that I wasn’t a certified counselor or a medical doctor, I could use my own experiences to offer words of hope and strength.
I listened and attempted to direct the conversation back to others in the room. We had 30 people, each guided by their individual ways of coping with hemophilia. At one point, I broached a difficult subject: I asked the group, “Is there anyone in the room who blames themselves for giving their children hemophilia?”
My wife had shared with me her struggles, and I know she wasn’t the only one to experience shame and blame.
One woman with a 2-year-old raised her hand. Through tears, she said, “I still do. I carried my son, and it is through the X chromosome that he contracted the disorder. I did this to my son.”
I felt those in the room collectively hold their breath upon hearing the confession. I did the only thing I knew to do — I acknowledged her feelings and invited others to share their struggles. The conversation turned out to be beneficial for many participants, and several others seemed to breathe a sigh of relief when they realized they were not alone.
Shame and blame are real culprits for newly diagnosed families. From my experience, my wife felt like that woman in the group, and I felt like a failure for being unable to keep my family healthy. The men in the room understood my feelings, and several expressed how inadequate they felt as husbands and fathers.
Many men believe a lie passed down to us through generations that we are the fixers. If there is a problem, Dad will solve it. We can let this type of thinking hold us hostage and paralyze our ability to help, including the very family we want to protect. Only by realizing that we can’t change some things may we move forward.
While I am not an alcoholic, I love the “Big Book” by Alcoholics Anonymous. One phrase that stands out to me is, “… [W]e had to quit playing God. It didn’t work.” While we can’t change our diagnoses, we certainly can change our reaction to them. We can be the ones our spouses cling to as we reassure them that they did nothing wrong.
Fathers can remind mothers that they did not cause their children to have hemophilia. What happened was a genetic misfire not based on anything they did. We can say this over and over to our spouses until they believe our reassurances as truth.
Many years have passed since our breakout group, and I still hear the effects of shame and blame on newly diagnosed parents. Several people that attended past meetings now serve in leadership capacities, often addressing feelings of guilt. They carry the message of hope found in the hemophilia community. Like most of us, many find strength when realizing that they are not alone in their struggle.
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.
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