Some time ago, a friend told me about an acquaintance whom she hadn’t seen for a long time. The acquaintance had a long history of health challenges, but as far as my friend knew, she was doing well.
Then the two met at a holiday gathering, and something seemed very amiss. My friend greeted the woman with a cheery, “Hi, you look great!” But instead of a pleasant greeting in return, she got an icy stare and a sarcastic retort, “Great? You think I look great?” Stunned and confused, my friend retreated to the other side of the room.
Later, my friend spoke with the woman’s partner, trying, as tactfully as possible, to ascertain what was wrong. The man was cordial and pleasant, but denied that his partner of over 30 years was anything but her “usual” self. Not long after my friend spoke to him, the couple abruptly left.
Some time after that, my friend asked me what I thought about her friend’s behavior. I told her I could only guess, of course. But her description of the woman’s demeanor reminded me a great deal of the way some people behave when they are trying to hide a serious illness from family and friends. Too uncomfortable or frightened to talk openly about what’s going on, they retreat into silence and move further and further from the people with whom they were once close. They hide behind pretense, acting as if everything is as it was, putting up enormous emotional barriers to keep questions and questioners at bay. And they demand complicity from spouses and partners so they can keep up the illusions that everything is OK, even when it is glaringly obvious that it’s not.
Why some people behave this way when faced with a life-altering illness isn’t all that clear. But I believe it has a lot to do with the fear of being vulnerable — the fear of being perceived as weak. People don’t change their personalities when they become ill. Someone who was stoic and reserved and fiercely independent when they were healthy is unlikely to ask for comfort or support when they get sick. They may want to do so…they may need to do so. They may even become angry and bitter because they aren’t getting what they need. But reaching out over the gaping chasm created by years of believing that they had to handle everything themselves may simply be too difficult. Sadly, both for them and for their loved ones, they feel they have no choice but to maintain the pretense of normalcy and bear the burden of their illness alone.
One of my favorite authors is Brene Brown. In her books, she writes frankly and with empathy about why so many of us feel the need to isolate ourselves and pretend to be other than what we really are — how our shame-based culture teaches us that being “ordinary” or less than perfect makes us unworthy and unlovable, and leaves us feeling as if we are never “good enough”. And she tells us (and I believe) that it is that kind of shame and self-loathing that prevents us from living the way we deserve to live or, in the end, dying the way we deserve to die.
So, how does a person who has never been able to break free of that kind of shame and self-denial do so when they are ill? I don’t know the answer to that. But I know from experience that some people never will. And we, as friends and loved ones, can’t blame ourselves for that. We can try to help. We can try to reach out. We can be present and listen, and look for a sign that a lifetime of pretending may be starting to wear thin. But in the end, all we can really do is meet people where they are. And sometimes where they are will be very far away from the love and care we want to provide.
“Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.” ~ Brene Brown
Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.