My Hair Loss Journey

I was sixteen years old when suddenly, over the course of three short months, all of the hair on my head inexplicably fell out. I’m now 23 years old, and have struggled for years to put thoughts to paper about what life has been like living with this condition. I’ve finally put together this story recounting it all, as well as eight lessons that I’ve learned along the way.

The purpose of this article is not to garner respect, sympathy, or attention. It’s not to diminish the struggles that others face. Indeed, the challenges of hair loss pale in comparison to the challenges and suffering of so many other people in the world.

It is written with hope that some will read this and feel comforted that they’re not alone with their insecurities and emotional pain relating to a medical condition or any other problem that paralyzes their psyche. Itʼs to get a conversation going about what it means to be defined by something – and how to overcome it. Itʼs written to offer some thoughts on finding joy in life again despite difficult circumstances. It is written to offer hope.

Me, present day.

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MY STORY

I was a well-adjusted, athletic girl who did well in school and had a wide circle of friends. Then the unthinkable started to happen. My long, thick, wavy hair began to fall out.

The thinning increased at a rapid rate, as did my frantic visits to doctors in virtually every field of medicine. No one could figure out what was wrong with me. Soon my hair was all gone.

Already dealing with the typical angst and awkwardness of the teenage years, made worse by a gawky, 5’11” frame and a mouthful of braces, I felt hit with a ton of bricks by this unexpected twist in life. It was not until many years and doctors later that I was officially diagnosed with Systemic Lupus – an autoimmune disease with many symptoms, one of which includes hair loss. (What you’re about to read is not a medical overview of Lupus; while raising awareness of it is very important to me, what I chose to write about today is not what you’ll learn through a quick Google search.)

So hereʼs my story, one of pain and hope, told amid eight lessons that I learned along the way. Looking back, I wish I had learned them sooner, but better late than never. Maybe these will help you gain a few insights, sooner than I did, that will help you as your own story unfolds.

1. How easy and self-destructive it is to be an angry person.

I spent six years of my life being angry.

Angry at my hairdresser for telling me “to stop using heat products” because that’s why I was losing my hair.

Angry at the countless “top” doctors who could probably perform open-heart surgery while blindfolded but couldn’t figure out why I would wake up every morning with a pile of hair on my pillow that had fallen out overnight, or why my heart would skyrocket to almost 200 BPM, or why Iʼd lose all feeling in my hands and feet, or why my joints would swell up to the size of baseballs.

Angry at every girl, including close friends, who would utter even the slightest complaint about her hair being too short, too curly, too straight, too frizzy. Angry over words like “bad hair day” and tears from haircuts they weren’t satisfied with. You never notice how often people complain about their hair until you don’t have any.

Angry at every model on every advertisement who would wave her flawless, shiny, luxurious locks in slow motion – mocking me and rubbing it in my face that I’m bald.

Angry at myself for breaking down and buying a wig.

Angry at everyone I would talk to or pass by who would stare, not at my eyes, but at my wig, with the baffled “That can’t be her real hair” look.

Angry at my family and the desperate comments they made to try to make me feel better. “You donʼt need to wear a wig. Youʼre beautiful without it.” No, I’m not, I thought. I couldn’t even look in a mirror without crying.

Angry at the comments from those closest to me – comments that I knew were true but I didn’t want to hear, let alone accept, such as: “Youʼre letting this define you as a person.”

Angry at articles like these that I would stumble upon online:

“What Your Hairstyle Says About You”

“Women, Don’t Cut Your Damn Hair”

“Girls With Short Hair Are Damaged”

I have learned that it is so incredibly easy to be angry, and to stay angry – at people, at circumstances, at anything considered unfair. When weʼre consumed by indignation, it is impossible to be introspective, to self-reflect, to improve, to learn to accept what we canʼt change. When weʼre angry, our minds aren’t nearly clear enough to ask ourselves the most important question: “What can I do to make myself better, despite my circumstances?”.

Acceptance, introspection, self-improvement…these are some of the most difficult goals to achieve when you feel like life has sucker-punched you in the gut. So I stayed angry instead…at all the wrong things, and for all the wrong reasons.

2. What it really means to be “defined by” something.

“Donʼt let [insert hardship here] define you as a person”. We throw quotes like these around all the time. But what does it actually mean to be defined by something, especially something beyond your control?

Initially, back in high school and well into college, I associated being “defined” by something with how others perceived me. If I told people about this mysterious, bizarre disease, or if I showed people what I really looked like without hair, I would then be defined as “The Bald Girl” or “The Sick Girl”. To everyone else, I wouldnʼt be “Mary” anymore. And thus, by concealing everything, I wasnʼt letting it define me. Right?

After 11 years of playing soccer, I gave it up. I quit doing the thing I loved most in life because I couldn’t play with a wig and couldn’t imagine what it would be like if everyone saw me bald. I didnʼt quit right away, though. I spent almost an hour before every soccer practice and game, clipping in painful weaves and using tight headbands to keep them secured. I did this at least three times a week. Sometimes, when taking them off after games, my scalp would be bleeding from the clips. There was a time when soccer was my escape from life – the rest of the world could be burning, and the only thing on my mind would be what was happening on the field. I used to play with true, unfettered passion – maybe too much passion given the concussions, torn ligaments, and double-fractures that I suffered over the years. THOSE medical problems never stopped me. Hair loss did. In the waning days of my soccer participation, the only thing on my mind was “donʼt fall, donʼt go for headers, donʼt run too fast, donʼt collide with anyone” lest my hair piece falls off. Playing soccer was no longer a passion – it was a fear.

The beach girl, who would spend hours on end in the ocean, being tossed and thrown around by waves from sunrise to sunset, was gone too. I would still go to the beach, but venture into the water only waist deep at most. What if a giant wave – the kind that I used to love – hit me out of nowhere? Literally hundreds of people will see a bald me and a wig floating out to sea! The beach, just like soccer, became a thing of dread and anxiety.

How could I not see that I had become a slave to my disease?

I tried to do other things that would make me feel exuberant and alive. But I never felt an ounce of joy from them. I went skydiving on my 18th birthday (something Iʼd been waiting to do since I was a little kid), wearing a wig which was bound to my head by four headbands and a helmet. Needless to say, I was more terrified of the humiliation I would face if my wig flew off than plummeting 10,000 feet from the sky. I went to concerts, but didnʼt even hear the music; I stood in the back, more concerned about who may bump into me, stripping my head of its fake locks. The semi-annual Six Flags trips came to a halt; wild roller coasters and wigs just didnʼt go together. A simple walk outside brought dread with every gust of wind. I would ride in cars with my friends, but would panic every time someone rolled a window down. I avoided crowded places at all costs, fearing my wig would get ripped off like it did several times in the crowded hallways of my high school.

I made and kept wonderful friends, but I distanced myself from them. I dated guys, but always ended things quickly before they had a chance to develop. I let my condition destroy everything that was once meaningful to me, transforming passions into painful and fearful experiences. My zest for life was obliterated.

The truth is, I was terrified. Terrified of being seen differently. Terrified of being treated differently. Terrified of getting sympathy that I didnʼt want or ask for. Terrified of being seen as a “freak”. Fearful of being laughed at or gossiped about more than I already was. Fearful of embarrassment and humiliation. Fearful that people wouldnʼt understand it was a medical condition. Fearful that this tall, gangly teenager would call even more unwanted attention to herself than she already got.

So I continued to live in fear, with varying success in coping, for six years.

The unpredictability of my mystery disease, the bizarre and unnerving symptoms, and a completely shattered self-esteem, coupled with trying to conceal all of that from everyone I knew – took an unimaginable toll on my mental health and stability. I gained a more profound understanding of what words like “anxiety” and “panic attack” meant, which turned out to be far more than simply worrying a lot about something. Of course, I had happy days, fond memories, great friends, and a smile on my face most of the time. But deep down, I was crippled.

I remember when my attitude and perspective started to change. I was crying my eyes out to my mother, saying, “If I ever become open about this, I won’t be ‘Mary’ anymore. I’ll be The Bald Girl. Iʼll be The Sick Girl.” She looked at me with tears in her eyes, and I’ll never forget what she said next: “Or, you would be The Brave Girl.” You can let yourself be defined by something of anotherʼs choosing. Or, you can choose to define yourself.

If there is something in your life that is stopping you from being “yourself”, then it is defining you. If there is something stopping you from doing the things that you love the most, the things that make you feel alive, if it is causing you to distance yourself from other people, damaging relationships with others, cutting you off from the rest of the world, if itʼs something you dwell on obsessively, or keep in the back of your mind relentlessly…it is defining you. Itʼs a hard thing to admit – “I am letting ____ run my life”. But, as is the case with many things, admitting is the first step to remedying.

3. Donʼt expect people to understand what youʼre not willing to talk about.

For years, I did not speak a word of my hair loss, or lupus, to anyone with the exception of my immediate family, my doctors, and my very best friend. I told no one, not even my college roommates with whom I had lived for four years. I’m sure most of the people in my life knew I had a medical problem of some sort, just like they were probably well-aware of the fact that I wore a wig. But there was a mutual understanding that it was something that I was completely unwilling to speak about, and that no questions were to be asked.

Yet, ironically and unfairly, I was frustrated that they didn’t understand what I was going through. I know it sounds ludicrous, but in retrospect, I was frustrated with myself even more. How would I even begin to go about explaining this disease that was running my life, as well as the toll it had taken on me? How on earth do you bring something like that up?

One day, I reached a breaking point. To be honest, Iʼm not sure what triggered it. There was no straw that broke the camelʼs back. I just decided that I didnʼt want to live like this anymore. So, I took a picture of myself without a wig for the first time, typed a long explanation of lupus, my diagnosis, the effects of it, and that I am done keeping it a secret. I posted it on Facebook for everyone I knew to see, closed my laptop, and poured a glass of wine. Within 24 hours, I received hundreds of “likes”, the kindest, most heart-felt comments imaginable, and several dozen private messages, many from people I didnʼt know. These messages ranged from people saying how inspired they were, others sharing their own experiences of their battles, not only with various diseases, but with insecurities including hair loss, stretch marks, their height, birth marks – the list could go on forever. I received messages from people I knew who seemed to “have it all”, who outpoured about issues they faced that I had absolutely no idea about. These stories drove me to tears. One sixteen year old girl contacted me, saying she recently lost her hair and dropped out of high school because she was being bullied so much. Others put me in contact with friends and family battling cancer, who told me that the hardest part of all for them was dealing with losing their hair.

After “coming clean” my junior year of college, the unimaginable happened. In addition to the absolutely overwhelming support and kind words from my friends, family, and strangers….there was no more gossiping. There were no more confused stares. When there were stares or puzzled looks, people felt comfortable enough to ask questions. Once I became open about everything, I realized that people were more curious than anything. And now they had a chance to ask me questions about lupus, and I now had a chance to talk openly about it, raise awareness about it, and inspire some people along the way. And when you open yourself up to others, they will open up to you too.

I started going out in college without a wig. I went to Six Flags without a wig. That summer was the best of my life – diving into the ocean, feeling the waves of salty water and sun on my head, free of itchy wigs. I never knew it was possible to feel such liberation. Of course, leaving the house as a Bald Girl proved to cause a bit of anxiety (it still does), but the good kind of anxiety – the kind you get before an important speech that you know youʼre going to kill if you take a deep breath and remember that this is what youʼve been waiting for. Itʼs amazing what addressing the elephant in the room can do. Donʼt expect people to understand the first thing about your struggle if you are unwilling to talk about it.

Bald in public – finally!

4. There are people who will find me unattractive without hair, and thatʼs okay.

You donʼt need to be found attractive by everyone. If there is something that youʼre insecure about physically, letʼs not sugarcoat things – there is a chance that there will be people out there who donʼt find it attractive. But, there are also people out there who will, as well as those who donʼt care either way, and others who simply donʼt notice at all. Iʼm sure that my bald head sends some men running for the hills… and Iʼm okay with that. I donʼt like being told, “If someone doesn’t think youʼre pretty without hair, theyʼre an a******.” People are allowed to have preferences and opinions about appearances as much as anything else, and itʼs not up to us to tell them that theyʼre wrong. Someone could just as easily be turned off by my sense of humor, or my height, or any other aspect of my looks or personality. Whether I like it or not, there are men and women who consider hair to be an essential element to a womanʼs beauty. And while I do firmly believe that society places unattainable beauty standards on women (and men), writing people off as terrible, insensitive, emotionless assholes simply because they donʼt love your differences is childish. And trust me, it wonʼt make you feel any better.

This has taught me a new, more effective way of comforting people: being realistic. I find it much more comforting if someone says, “True, some people may not think bald is beautiful, but some will.” But most importantly – even if no one in the world thinks that bald is beautiful, there are more important things than being found attractive and desirable… like being smart, or funny, or courageous. I know for a fact that some of my male friends donʼt find bald heads on females attractive. But I can sit in a room with them without my wig and laugh with them and be very close friends with them. Why? Because I have their respect. And Iʼd take that over all else any day.

If someone does not find something about you attractive, especially something that you canʼt control, do you really think that youʼll be worried about that in 5 years? 20 years? on your deathbed? Or, rather, do you think youʼll wish you came to terms with your insecurities earlier and spent much less time caring about othersʼ perceptions of you? Never forget that your opinion of yourself is the most important opinion of all.

5. For every mean-spirited person, there are 10 more kind ones.

As you can imagine, especially in high school, there was the bullying, the rumors, the assumptions. It got back to me at one point that I apparently “went crazy and shaved my head”. Oh, and that I had cancer. I remember being asked and laughed at, “Whatʼs wrong with you? Where is your hair?”. Once I started wearing a wig to school, two boys purposely tore the wig off of my head in the middle of a crowded hallway on a few separate occasions. Another time, I was in a bathroom stall when I overheard two girls talking about me saying, “Mary is so f****** fake. Does she really expect people to believe thatʼs her real hair?”. These are just a few examples.

I still remember everything about those people. Their faces, their voices, what they said and how they said it. Everything. And I remember hating them. But hate, just like anger, is an easy thing to feel. I think itʼs impossible to forget everything about those dark times, but I now chalk up the negativity to “they were young, they were ignorant, and they were likely just as insecure and vulnerable as I was at the time.” I went through a period where Iʼd kick myself for crying in that bathroom stall, rather than bursting through the door, taking off my wig, and saying, “It’s a medical issue, you bitches.”

Flash forward about six years when I started going places without my wig – happy, free, and serene. One time, an old lady approached me at the gym and said, “Honey, youʼre beautiful, but please grow your hair out. Youʼd look so much better.” I told her, “Well, I would if I could, but I have lupus”, smiled, threw my towel over my shoulder, and walked away. Another time, a man walked up to me, staring, and said, “Is that whatʼs in vogue now?” Puzzled, I replied, “What?” He said, “Shaving your head like that?”. These people exist. But if I were to respond with hatred or anger, I would be handing them power over me – power that they donʼt deserve.

That said, for every negative comment, there have been at least ten positive ones. I remember when my mother took me to buy my first wig when I had just a few patches of hair left before it all fell out. The wig looked okay, much better than the patches of hair on my almost-bald head, but it was still quite obviously a wig. I remember the day I went to high school wearing it for the first time, and not sleeping the night before, nauseous and panicked about what others may think. I remember a girl, who I was always friendly with, but never quite that close with. I remember the hallway we crossed paths in. I remember her looking up at me, flashing a casual smile, and saying, “Whatever you did with your hair…you look beautiful.” She smiled and walked away, and the lump in my throat grew so fast that I couldn’t even muster a “thank you”. Rather, I turned the corner and burst into tears. “Thank you” aren’t strong enough words to convey what I wanted to say to her. And I remember her simple, genuine smile and words more vividly than any of the negative comments. Going to school that day was the most nerve-wracking day of my life, and I managed to pull through it because of her. That was the day that I learned how just one smile, one compliment, one kind remark – can change everything for someone. She’ll never know what that simple, yet poignant, gesture meant to me.

To this day, I receive compliments all the time, and it often leads to deeper conversations, often resulting in others explaining their own personal battles. Plato said, “Be kind to all, for everyone you meet is fighting a battle you know nothing about.” Iʼve found this to be so important and so true. People want to be heard and for others to understand. By “exposing” my real self, I was able to connect with others, including strangers, on a much deeper level.

6. Suffering is universal. So who am I to whine?

Looking back, the most painful regret, even more so than not accepting my condition years before, was the harsh judgment I cast upon others. Woe is me. They will never understand what itʼs like to have this disease. What do they know about being crippled by pain and anxiety every single day? They wouldn’t last a day with this disease.

I’ve said it before, and Iʼll say it again: if I could go back in time, and slap my teenage self in the face, I would. Over and over again. Stuck in a bubble of self-pity and narcissism, I failed to realize that the same people whom I judged so harshly have all endured, and are currently enduring, unimaginable hardships of their own. We are all bearing crosses, we are all hiding our insecurities, we have all lost something that weʼll never get back – and how lucky I am that the thing Iʼll never get back is just my hair.

I may have lupus, but I have people who love me, a roof over my head, and a million and one reasons to wake up in the morning. I may not have hair, but Iʼve had the ability to travel the world, receive a great education, and reap far more than I deserve. This is more than can be said for the vast majority of people in this world.

In the past, whenever I heard someone complain about a bad hair day, or their hair style, or new haircut – complaining to me, a girl with no hair – I would sometimes almost shake with rage. Now, I just smile, and say that they look fine. And I mean it. Because they too are enduring battles that I know nothing about. Now, I can only imagine how many petty things Iʼve complained about to others. Looking back, Iʼve probably complained about my parents to people with no parents, complained about the stresses of college to people who could never afford to go to college, complained about work to people who couldnʼt find a job. As cliché as it sounds, there are always people who have it worse – and they are all around you. I wonder who is reading this right now and thinking, “This was the hardest battle of her life? Lupus? Hair loss?” Really?!?”.  (For the record, if you are thinking that…I don’t blame you.)

Griping and complaining is a part of life. But I think itʼs fair to say that we all should be a bit more self-aware when it comes to both appreciating what we have and not being so miserable about what we donʼt.

7. Your pain is shared by others more than you realize.

I was lucky enough to have the strongest support system imaginable – my family. They were there offering constant and immeasurable support, and I am forever indebted to them for that. Iʼm sure there would have been countless others, but I never gave them a chance. They might have been the most understanding and empathetic friends in the world, but I couldnʼt bring myself to talk openly to them about this struggle of mine. After my Facebook announcement to the world, my best friends and roommates cried to me, saying over and over again, “I just wish I could have been there for you all along.” And I know they would have.

I had to talk my sister out of shaving her own head to show her support. To this day, she still comforts me on my bad days, which believe me, there are still plenty of. She still stands by my side when I’m anxious about going out somewhere bald. My dad would look me in the eye and say, “I’d give up anything if it meant you could get your hair back.” My mom was the one who accompanied me, especially in my teen years, to just about every doctorʼs appointment. Prior to my lupus diagnosis (autoimmune diseases are among the most difficult to diagnose), I was told, over and over again by doctors, “I’m sorry, but I donʼt know whatʼs wrong with you.” It was my mother who would hug me, time and time again, after bad news. Most of the time, when leaving the hospital, I would hold back tears at least until we made it to the car. Sometimes, I couldn’t, but she was there through all of it.

Remember that there are countless people who want, from the bottom of their hearts, to support you and help you however they can. Seeking help from people doesnʼt make you weak. It makes you human.

That said, itʼs also important to remember this: donʼt just be strong for yourself – do it for your loved ones too. They share your pain, combined with a helplessness we canʼt begin to comprehend.

8. Reconciling with what you canʼt change.

Lupus is a medical condition for which there is no cure, and in a way, this makes me lucky because it means that there is no question as to whether or not I can change it. My path is therefore quite clear – accept it and make the best of it. But the hardest part is recognizing the distinction between what you can and canʼt change. The hardest part is taking a long, hard, honest look in the mirror and questioning what aspects of yourself you can change for the better.

There are days when I look back on those first six years and wonder how different they would have been if I had the courage and serenity to accept what I couldnʼt change from the get-go. These are the same days that I must remind myself that those six years, too, are something that I canʼt change – theyʼre the past. They were the most painful years of my life, but they were also by far the most important. Thereʼs a great possibility that there will be more painful years in the future. But I know now that I will be able to approach them with twice the tenacity and resilience and bravery than I would have had if I had not faced these challenges. I also have a new found sense of empathy, humility, and understanding.

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I’ve labeled these eight insights “lessons”, but it’s important to remember that “learned” is not synonymous with “mastered”. I still have a long way to go, and Iʼm still working on fully embracing these lessons myself. But what I have mastered is perhaps the most important step – acceptance.

If you are consumed by things that you canʼt change, remember: it is never too late to change your outlook. The journey may be easier than you think, as we always tend to underestimate our resiliency. The journey may also be a grueling, frustrating, uphill battle, but it may be the most important battle of your life. Remember that itʼs our indomitable spirit that makes us human. Mastering our fears, insecurities, losses – you need to believe that itʼs possible. And I challenge you to try.