MOTH AND BUTTERFLY by Terese Weir

Ever look in an empty cocoon as a most glorious butterfly leaves it? I’ll bet there’s a mirror in it.
When a woman loses her hair, which for her has been a safe haven and the only part of her body she truly believes is spectacular, she desperately wants to trust that her husband loves her for who she is, not for the dead protein on the top of her head. But when rage replaces reason, no soft whisper or kiss at the back of her now hairless neck is going to convince her that she is anything but a ghost of the woman she was.

Grief is inglorious. My mirror offered only heartache. The refection lied; the face I saw was a stranger’s. I had no passion in me for my husband’s touch. I wanted intimacy only with my fantasies, which were rich with beauty and wild hair and flirting, and being irresistible to any man who saw me. I ached for an embrace in our darkened bedroom to comfort me, but I wouldn’t allow it. I turned away from the one person I needed the most.
My husband continually encouraged me to remember “Terese” and learn to embrace me again as changed, but not absent from life. It took years but slowly I woke to the possibility of discovering who I was under all that hair. My security lay firmly in the strong hands of the man I’d vowed to love until my death. He carried me over many lost days. I healed.

Ironically, sadly, as the mirror stopped watching me and I began looking back, as I emerged from my cocoon to fly, I lost something. My husband left me. I listened shakily as he assured me that his decision to end our twenty years together had nothing to do with alopecia, but he admitted that my struggle with hair loss had drained him more than he’d let on. As I write this, I am still reeling and scared to pieces, (changes again), but I know as surely as anything that I will never forget all the hits he took for me as I railed at the world, pounded my fists and wondered why me, why me.

Now, I am what my darling man always called me – a cute bald chick – and the rest of my life is waiting.

As poignantly expressed in the above vignette, a woman’s hair loss can put significant stress on all of our social relationships, but especially our most intimate relationships. In the midst of a drastic and stressful change in our appearance, how many of us possess the strength to consider the impact of our hair loss on those who love us? In some cases, it is only with hindsight that we realize that we are not alone with our hair loss or our emotions.
Imagine for just a moment - you are a woman who has recently lost all of your hair. You don’t recognize the person staring back at you in the mirror. You feel you have lost an import part of yourself and with it, your identity, your femininity, your self-esteem. You lose all interest in being social because doing so means either hiding the new you or exposing yourself to public stares, thoughtless comments, or prying questions. At least you have your significant other, the one person you are safe to be the true you around and still feel loved and accepted.

Now imagine - what if your significant other instead tells you they can’t accept the sight of your bald head? What if the person you’ve slept next to night after night through so many of life’s up’s and down’s now tells you they need you to wear a wig to bed to be acceptable in your sleep? What if you’ve finally come to terms with your hair loss, you’ve learned to love your bald self, but your partner just can’t handle the sight or reality of your baldness? You wouldn’t be alone.

Imagine yet another possible scenario, you’ve lost your hair seemingly overnight. You are devastated. Your partner hardly seems to notice and insists you are loved for you, not your hair, that you remain beautiful, that after all, it is just hair. Try as he might to support you, his lack of reaction leaves you feeling alone, isolated, as if your emotions are not valid, angry at everyone, including the one person you trust most.

We’d all like to believe that the feelings our significant others have for us are based on who we are inside and out. No one’s appearance freezes in time on the day we fall in love, and ideally, love is far more permanent than our looks. Sometimes it is a dramatic change in our appearance that ultimately reveals the true colors of our significant others and their feelings for us. It’s the ultimate insult to the emotional assault of hair loss.

Just as each woman responds somewhat differently to her hair loss and a sudden, drastic appearance change, each of our life partners will also respond in their own way. In the end, some relationships will be strengthened by the storm, while others ultimately may not weather the storm.

4Women.com conducted two surveys exploring the emotional side of medical hair loss for women - one among women losing or having lost hair due to chemotherapy and in the context of fighting cancer, and the other among women who have lost their hair due to other conditions - Alopecia (autoimmune), genetics, or the many, many women experiencing hair loss with no clear explanation. The survey responses revealed many similarities and many differences in women’s experiences with medical hair loss. They also provided insights into the similarities and differences in how our significant others react to our hair loss or sudden baldness and what their reactions mean to us. As always, there is so much we can learn from those who have walked the path before us.

In the context of chemo, hair loss is temporary, whereas Alopecia and many other medical hair loss conditions are permanent conditions. Women who lose their hair during chemo are fearing for their lives, but are often reminded by others that their hair will grow back. Loved one’s sometimes have an especially difficult time witnessing a woman’s chemo-induced hair loss because it is such a visible reminder that their loved one is battling cancer.

Women with other medical hair loss conditions are often reminded by others that at least they’re healthy, even if their condition means lifelong baldness (as if this is insignificant). If a woman is completely bald (though healthy), she is often assumed to have cancer. If she simply has severe thinning, many of her peers and loved one’s will claim not to notice, leaving her feeling as if she’s obsessing over something less than real.
What unifies all of these experiences is that for women, hair loss has a major negative impact on their body images, self esteem, and quality of life.

I learned a great deal from our survey respondents about how our partners respond to our hair loss, our emotions, and how their responses might vary. There are those significant others who are confident and complete enough in their own bodies, lives and relationships to see and feel far beyond the loss of their partner’s hair or any major appearance change. There are also those significant others who have unacknowledged, unexplored, and unresolved issues with themselves, their pasts, and/or their individual life experiences. As a result, they cannot handle changes that challenge their sense of control over life or force them to confront their own fears and insecurities. In reacting to their partner’s hair loss, they may be reacting to their own fears - fears of mortality, fears of being alone, fears of aging, fears of change, and so on. At least this is how I’ve made sense of the heart-breaking number of survey accounts of husbands who insisted their wives (more often than not, women battling cancer) wear wigs at all times, including to bed, and even made demeaning comments about their wives’ appearances as bald women.

More often than not, our partners seem much less impacted by our hair loss than we are. On the surface this is helpful, but the difference in perception brings its own challenges. Our partners may remind us that we are still the same person, we are more than our hair, or they love us, not our hair. This might be reassuring, but many of us will still feel insecure and wonder whether they still find us attractive. Too much reassurance can even be a source of frustration, indicating that our partners simply don’t get it, don’t understand why it’s such a big deal, don’t understand what it feels like to be a bald woman in our extremely appearance-conscious society. Rather than feeling supported, it may feel like our support-person is running, not truly listening, or even invalidating our feelings.

Let’s face it, change isn’t easy for most of us. Major appearance changes require that we all adjust, and we’re likely to each do so in our own way and in our own time. As for those of us going through the major appearance change, what we most need is for our partners to try to understand what we are experiencing, not to criticize us or attempt to sweep the whole issue under the rug and make it disappear. We are grieving a loss. By simply acknowledging our pain, listening to us and validating our feelings, you can help us adjust.

We are not alone. We bald or balding women need to remember that our emotional stress impacts those who love us and that if we shut them out or refuse to let them adjust because we have not, we run the risk of alienating them to the point that they are forced to move on without us. Our double challenge is to let them know that they are not alone either, that our love for them did not disappear with our hair.

Susan Beausang