Struggling to decide when to share about living with chronic illness
I haven't always been met with kindness and understanding
Illness can be challenging to navigate. When we miss work or school, we may feel the need to share at least some information. However, when an illness becomes chronic, we may feel even more obligated to further explain its impact on our life. In revealing the complications, we probably aren’t looking for sympathy, but for compassion and understanding. However, in my experience, that is rarely what I receive.
I’ve had lifelong health issues, from recurring childhood illnesses to adult diagnoses of Lyme disease and now hereditary angioedema, among others. I am fortunate to have been able to work from home throughout most of these years. However, the mercurial and random nature of my symptoms has still taken a toll on my family, work, and social life.
I am truly blessed to have a husband who is compassionate and understanding. However, my support circle pretty much ends with immediate family. Over the years, I’ve sadly lost fellowship, friendships, and even some extended family connections due to ongoing health challenges.
Having a degree in education, I began homeschooling my youngest son during a health crisis he had in sixth grade. Therefore, once our daughter Leah finished preschool, I taught her, too. Little did I know what a godsend homeschooling would become in her journey.
When Leah first became ill with multiple symptoms, friends and family shared their concerns. But as time went on, we began to get more questions than concerns.
She attended a weekly cooperative education program where many of the participants came from faith-based backgrounds. There was some level of empathy at first, but over time, some seemed to become downright suspicious of us.
People have asked if I’ve considered that Leah might be faking it all, and I’ve even been questioned in front of others about the specifics of my own diagnosis. Some have gone so far as to suggest that maybe it was all a case of Munchausen syndrome!
At the time Leah’s health severely declined, she was attending public high school. She soon became bedridden, dependent on daily infusions via a central line. Being overwhelmed with caregiving, my husband and I reached out to the school system about providing in-home tutoring. Leah went through a battery of tests to see if she qualified for services, but was ultimately denied. We tried to involve legal counsel, but to no avail. Leah had to miss her entire freshman year.
At this stage of the game, we’ve learned the hard way to be very protective about revealing our diagnoses and ongoing health challenges to others.
Honestly, when it comes right down to it, I don’t wish for anyone to truly be able to comprehend our suffering, as that would mean that they have struggled with a similar situation. With age and experience comes the wisdom of choosing with whom I share and how much.
Fortunately, we don’t have to suffer alone, as there are people who genuinely care, and there is support available through specific disease awareness groups, support groups, private counseling, and advisers. Please make yourself a priority!
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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