Blue Yonder Associate Shares Journey of Hair Loss, Healing and Embracing Resilience
September is Alopecia Areata Awareness Month, which focuses on an autoimmune disease that causes hair loss. The severity can range from small patches to complete hair loss. Blue Yonder associate Charlotte Diener shares her journey of diagnosis and how she learned to make lemonade out of lemons.
Picture that your hair is gone. Your eyebrows, your eyelashes, all your body hair —gone. What are you looking at? What’s left? Do you have a lost sense of self? Or can you look past the shock and recognize the chance to turn adversity into opportunity — turn lemons into lemonade — and thank goodness for that?
Alopecia Areata can be so instantaneous and with no warning that it can be life upending and traumatic to deal with, including dealing with the shock of the unexpected.
For any hair loss, it’s not just a physical change; it’s an emotional process. Just as we grieve the loss of someone who leaves this world, we grieve our own transformations that comes with hair loss. What I learned is that through the stages of grief, we can find ourselves again. We can rediscover our identity.
A few weeks before my own hair loss, my hairdresser noticed some small bald patches on my scalp. I tend to be pragmatic and always in a rush, so my immediate reaction was, « Fix it! » Fourteen new extensions and $400 later, I was ready to dance again, confident and carefree again.
Then came the day that changed everything. It was a beautiful day — my friend and I were kayaking around Djurgården in Stockholm. The water was like glass, calm and serene, reflecting the peaceful beauty of nature. Living in a city where it’s so easy to escape into nature is such a privilege. I had recently moved back to Sweden after 19 years in New York, which had been a bit of a culture shock. But dancing — especially salsa — opened up a whole new side of Sweden for me. I found friendship, community, and joy through dancing, and it helped me adjust to my new life.
After a full day of kayaking, we had salsa dancing on the agenda for the evening. After a quick shower, the plan was to head out and enjoy the music and the company of happy people from all over the world.
But everything changed when I stepped out of that shower. As I washed my hair, every single extension began to fall out. I could hear the sound of my hair breaking — crackling like tiny bones snapping. I started pulling out the extensions one by one, hanging them up on the shower stall glass, counting in disbelief. « One, two, three, four, five… , » I shouted from the bathroom. « Sophia! Every single extension is coming out. My extensions are coming out. I’m afraid to step out of the shower. »
But eventually, I had to face what was waiting on the other side of the bathroom door. The person staring back at me in the mirror was a stranger. I looked like a distorted version of myself. I was in shock, unable to speak, unable to comprehend the enormity of what was happening. I opened the door to show my friend, and she broke down in tears.
But, believe it or not, we still made it out of the house that night. Somehow, I pulled myself together, scrunched what little hair I had left into a bun, tied it up with a fishing line that still had bits of hair clinging to it, and topped it off with a white Adidas hat. I threw on a dress, got on my bike, and we headed out for a night of dancing. That hat is still with me.
Even in the face of loss, life goes on. It takes courage, but we continue — imperfect and transformed — yet still ourselves.
The next morning, I woke up, hoping it had all been a nightmare. But it wasn’t. It was real — my hair was gone, or at least nearly all of it. In a panic, I covered every mirror in the house. I couldn’t bear to see myself. Then, I called a friend who quickly googled a wig store in town. I grabbed my hat, hopped on my bike, and pedaled the 15 minutes to get there.
I made it clear to the staff — I wasn’t leaving without a wig even though they were closing in 30 minutes. They sold me one, an outrageously expensive one, without offering any advice or mentioning any health care benefits that might have been available to help cover the cost. Looking back at that awful wig, which they sold to me with no alterations, I wish I could send them a bill even now, six years later. Wigs, as it turns out, are a whole science unto themselves.
Did you know that a synthetic wig in Sweden costs around $500 to $700? It might look good for two months, but you’ll be lucky if it lasts six months. Real hair wigs are even pricier, ranging from $1,200 to $5,000, and they’ll only last nine to twelve months. One wig isn’t enough — you need several. And if you happen to have a small head like mine, you can tack on another $75 to $100 for alterations. Then there are the extras: eyelashes, tattooed eyebrows (which, by the way, was the best thing I did!), and special hair products to make the wigs last longer. Let’s just say, losing your hair can become a very, very expensive « hobby. »
That morning, after my initial freak-out, I closed my eyes, prayed, and opened my Bible. The first verse I read: “I have every hair counted on your head…” Wait, what? I couldn’t believe it. I closed my Bible, prayed again, and opened it to a different chapter. And yet, there it was again, almost the exact same message: “And even the very hairs of your head are all numbered. So do not be afraid; you are worth more than many sparrows.” How ironic!
The moral of the story? You are cared for, you matter, and there is a plan for you. Sometimes, you just have to sit tight and trust the process and the timing. It’s easier said than done, learning to trust the plan sure has been a journey. My faith keeps me grounded, and I’m deeply grateful to have a solid foundation to lean on.
So, how did I manage? I’m incredibly grateful that I had the presence of mind not to let myself sink into depression or self-pity. Oh, and did I mention I had just turned 50 and quit my job? Things were really great! 😊 But instead of wallowing, I decided to turn those lemons into lemonade. And not to forget, the emotional and practical support from my closest friends and family made all the difference!
I sold my small apartment to finance the next 12 to 15 months and rented out my overnight apartment to make ends meet. Then, I went to Mexico and did all the things I had always dreamed of: dancing, working out, eating healthy, taking care of myself, studying Spanish, and living in the Caribbean. Best decision ever! It was exactly what I needed. A little sunshine never hurt anyone. It turned into a beautiful experience — living healthily, surrounding myself with supportive and inspiring people from around the world, and most importantly, finding myself again. The friendships I still nurture from that period are precious.
Now, six years later, I still can’t say “it’s just hair.” It still bothers me every day in different ways. Sometimes it’s because I feel unattractive. Sometimes it’s the sheer discomfort. And other times, it’s the imperfect fit of a wig that makes me feel self-conscious — especially when I’m out and about, working out, or dancing. But despite all that, I can tell you this: It has taught me resilience. It’s shown me the beauty of sharing my story and given me a new perspective. It helps others to open up as well.
I refuse to let it bring me down or hold me back. I don’t hide it. In fact, I’m very open about it with anyone who crosses my path, and that openness has been liberating. Yes, there have been moments — like when an eyelash falls on my cheek during a Teams meeting or when I’m on stage at a kickoff and the air conditioning causes my lashes to flutter like crazy. Those moments can chip away at your confidence, but embracing vulnerability has freed me.
There are many variations of Alopecia. Alopecia Universalis, the version I was gifted with, means you lose all of your hair and there is an 8% chance of regrowth. And that regrowth may not mean 100% coverage and it also could very well mean that you could lose it as soon as you have gained it. An unpredictable autoimmune disease with no cure although there is some research taking place. There is nothing you did wrong or could have done differently. While it isn’t a deadly condition, it could have serious emotional and psychological implications. But there is a wonderful global community with much combined experience, words of encouragement and advice to tap into. Social media at its best!
To anyone reading this, no matter what you’re going through, remember: You are perfect just the way you are. Whatever is happening in your life right now, I would encourage you to remain resilient and surround yourself with people who can offer words of encouragement and practical support. There is so much more than the pure exterior, what we tend to see first. As we get richer from experience, we learn to value things that go beyond looks.
Feelings are temporary. Focus on the positives. While your situation may seem impossible to deal with in the moment, things will get better! Be patient and work on yourself in the meantime. Focus on what you have, on the blessings in your life, rather than what you don’t have. Staying positive attracts so many good things. And remember the power in sharing. It brings so many beautiful things in return.
When life deals you lemons, make lemonade.