Alopecia – One Woman’s Experience

This woman’s experience, to be exact.

There’s been a lot of talk lately – although more of it about one man’s actions than alopecia itself. So here’s a little something about experiencing alopecia. Please bear in mind everyone who experiences this does so differently. We all have unique comfort levels, priorities, insecurities, opinions, needs, etc. etc. etc.

I’d been working at Vancouver 2010 for about three years, and there were another six months to go before Games. Vancouver 2010 is by far one of the best work experiences I have had (and I’ve been lucky enough to have many wonderful work experiences). That said, it was 3 1/2 years of constant deadlines. What made this job hard wasn’t the work itself, it was the relentless nature of it. I was part of the incredible Brand & Creative Services team, and workload just got bigger and more complex as the Games approached. There was never a down time. I loved it.

I had also been in a long-distance relationship for about a year, with a man living in the UK — which brings its own ups and downs, challenges and rewards.

I thought I was handling it all pretty well, with a regular routine of yoga, working out in a boxing gym, swimming, time with friends – all the good stuff.

Then our incredible Design Director Leo passed away from a massive heart attack – he was 39, younger than me. Leo and I sat in the same pod of four, and worked closely together on a number of pretty incredible projects – many still in production at the time. The first ten days after he passed, I found my shoulders up at my ears. Full on tension, all being sent to the top of my head.

As soon as I, and my shoulders, started to relax, my scalp started feeling funny. Then it was on fire. I noticed hair in my hands as I washed each morning. For some this is “normal.” For some it’s a daily thing to find hair in their hands when they wash, doesn’t mean anything unusual is going on. Not so for me. For me this was a clear sign something was up.

I started asking my friends if they noticed anything – could they see that my hair was thinning/falling out? They all said no. Ben, who is over 6 foot tall, assured me that all looked well from his angle (I’m 5’3″).

Still, it kept happening, and soon it was even more obvious to me that something was up.

I now had a bunch of complicated feelings battling inside me:

• For years I’d watched my mum and her sisters have their hair thin as they aged. Was this karma for those not-so-nice thoughts I had about that? About not wanting it to happen to me?
• Was there something seriously wrong with me? Was there a serious physical issue?
• Was everyone looking at my head and judging my hair or lack thereof? (Yes, I am aware of the self-centred nature of this…clearly people have better things to think about than the hair on my little head…but still, the thoughts, the insecurity, the fear…it takes over at times. I am only human.)
• “Snap out of it” I’d tell myself.

Around and around it went.

After a couple of trips to my doctor, the word “alopecia” became part of my vocabulary. My first visit was too soon for it to be obvious, on my second it was clear. At about this time I started wearing cute little hats/toques every day. That’s how self-conscious I was. That’s how thin my hair was getting. I walked around in fear of losing my hat, or of having someone yank it off. I just did not want anyone to see what was happening on my head. I did not want to field questions, or talk about it. I wanted to wake up and have everything back to “normal.”

Next came the appointments with dermatologists who specialize in scalp/alopecia. The one I really wanted to see didn’t have an availability for two months. Alopecia isn’t life-threatening – there’s no sense of urgency or emergency. However, I was a walking mass of mixed emotions, afraid I’d break down if anyone said anything to me. I didn’t want to wait two months to have alopecia confirmed. I wanted confirmation so I could figure out what to do about it and move on.

I ended up seeing someone at St. Paul’s Hospital. What an experience that was… It’s a teaching hospital, and I was greeted by a medical student who asked why I as there. I explained and took off my toque. He left to get the doctor, who came in, took one look at me and said “I’ll be right back.” A few minutes later he entered the room with five students, asked them to look at me and give their opinion/guess as to what my issue was. Hell, the thought of that still makes me feel a little sick, and it’s been 12 years. A bunch of words were thrown out by the students – most of which I don’t remember, other than “Lupus.” Lupus? Come on! The doctor finally interjected, confirming it was alopecia. He then spoke about what could be done to help, the first step being injections of corticosteriods all over my head. The students left, and he proceeded to administer the shots. Mostly they didn’t really feel like anything. However there were a few spots at the bottom of my head, just above my neck, that hurt.

The doctor noticed the tears in my eyes and said, “Oh, you’re crying!” My inner voice wanted to scream “NO SHIT I’M CRYING! I’VE JUST BEEN TREATED LIKE A SCIENCE EXPERIMENT, WITHOUT EVEN ASKING ME, AND NOW YOU’VE JABBED A NEEDLE INTO MY HEAD, MULTIPLE TIMES!!! Instead, what came out of my mouth was “Don’t worry about it, happens a lot these days.” With that, I left.

Had he asked me before getting the students in, having them shout out guesses, and discussing me like I wasn’t there, I would have said yes and it would have been a totally different experience. Instead, I left feeling like I was some kind of weird, whacky science experiment.

I never went back there again. Luckily the other docter I wanted to see had an opening come up a couple of weeks later. Thankfully it was a much better experience all around.

There was now about a quarter of my hair left, and it was time to decide what to do. For the record, I have never had a thick head of hair. Having only a quarter was not a pretty sight. My hair was cut in a bob just above my shoulders, with bangs, which didn’t help either. So, what to do?

I went to a store specializing in wigs made from real hair. I tried on every kind of hair style and colour I could. I’d say it was “fun,” but it was all still too raw for me. I’d always wanted long, thick, curly hair. It was one of the first wigs I tried. In that moment I learnt why it is I do not have long, thick, curly hair. It looked ridiculous. Too much hair for my little face. I took pictures of myself with the various wigs on, which I sorely wish I still had. Unfortunately they were lost when my laptop fried the following year.

I wasn’t convinced a wig was the thing for me. Didn’t matter which wig I had on, I felt I was playing dress-up. It didn’t feel like me. And I don’t know how to be anyone other than me. The thought of feeling like this day in and day out didn’t sit well. Besides, I started every day either going for a swim, to a hot yoga class, or working out at the gym. What the hell would I do with the wig then? Certainly wasn’t going to wear it.

I’d already started contemplating just shaving it all off, but that was a scary prospect too. Me, a woman, in her 40’s, walking around with a bald head?

After talking to my long-time hairdresser Haul, he opened his salon for me on a Sunday evening, so nobody else would be there to witness this. I really didn’t want anyone to see me without my hat on. We brought a bottle of wine in order to make this as ‘celebratory’ as possible, and chatted as we always do. Then he said it was time to take my hat off and do it. “I look like I’m a cancer patient,” I said. “I’ve worked with plenty of cancer patients,” he replied. I sat down, and took my hat off. As I dialed my sister Hélène so she could “be there” as it happened (she had been encouraging me to shave my head), Haul got to work. Chitt chatty Haul was gone, and before I knew it, half my heald was shaved. As my hair fell to the floor, so did my worry, so did the stress of the the 2 1/2 months leading to this moment.

It was also a relief to see there were no strange bumps or dents or acne on my head. Seriously, you don’t know until it’s all gone!

Haul and I looked at each other, smiled, and agreed that we should have shaved my head a long, long time ago.

We also joked that he should have started with the middle of my head and given me a comb over, and taken photos. There’s no way I could have done that though – not until all the hair was gone and I was happy with the woman in the mirror looking back at me – could I have joked like this.

Haul had also booked a family in for hair cuts, well after he knew we would be done. We decided to put my toque back on, and when the mum and her two teenagers arrived he introduced us. He told them he’d given me just about every hair cut and colour out there (true story), but it was the first time we had done this…and he lifted my toque, exposing my freshly-shaved head. The 17-year old son said “wow, that’s sooo cool!” And with that, with the acceptance of a teenage boy, my confidence started coming back. For the record, his mum and sister also said they liked it. It’s just he was way more effusive in his reaction.

Now came the test of “wearing” this new non-hair-do daily. I was nervous as I walked into the office that Monday morning, still sporting a toque. Then my friend Julie asked me to take it off so she could see what it looked like. Julie’s reaction was so heartwarming, as was my friend Carla’s. Carla was sat at her desk, and upon hearing Julie, turned around and said “You look so beautiful.” More insecurities dropped. I didn’t wear my hat again that day.

The next morning I walked into my gym wearing a sporty Nike head cap. My trainer Richard looked at me and said “you shaved your head, why are you wearing that? Take it off.” So I took it off – hey, after years of working out with Richard, I was used to following his orders! He said I looked great, others who came into the gym said the same.

After that, the only reason I wore a toque again was temperature. It was November…you realize quickly how much heat you lose from your head when there’s nothing covering it.

Even though it was barely 2 1/2 months from the moment I initially noticed hair loss to shaving my head, it was a long road to get there – filled with doubts, tears and “why?” questions. The road also included a lot of support from family and friends. Friends who introduced me to others who had alopecia with whom I spoke and learnt. When I told my friend and boss Ali that I was going to shave my head because of alopecia, she sent me an email with photos of her “favourite super model, who was known for having a shaved head.” Shawn, a co-worker and friend, told me I was “rockin’ the bald look.” My friends Laura and Vicky, who looked at me in disbelief when I told them I’d gone to the wig shop, and said “Why did you do that alone? We would have gone with you!” In truth, although I took some physical steps on my own (well, ALL physical steps that is), I was never “alone.” With me, battling the fear, the insecurity, the “why’s,” was the support of my friends and family.

Even with all this support, it wasn’t always roses and sunshine. I remember looking at myself in the mirror one day, and seeing a woman with black boots, jeans, a black t-shirt and a black pleather jacket.
“Be careful,” the voice in my head said. “You don’t want to look too butch.” Whaaaattt??? No matter what, the insecurities have a way of popping back in, and sometimes with the craziest of statements.

I got used to my bald head quickly enough. And then, I lost most of my eyebrows. Weirdly, they fell from the inside out – leaving just a few brow hairs on the sides. A bald head was one thing. No eyebrows on top of that was another. I went into MAC and was taught how to draw my brows. Problem was, I apparently have a tendeny to touch my face a lot. The first time I drew on my brows and went out for dinner, I got home and noticed I’d smudged them all over my forehead. Clearly this wasn’t going to work. I just needed to get used to having no brows. Fortunately, they came back quickly.

On the plus side, I never needed to shave my armpits or legs, and it did give me the best “bikini wax” ever.

They say alopecia is an auto-imune condition, inflammation that causes hair to fall out. The dermatologist I saw for well over a year told me it was likely a gene I have, and an emotional stresser set it off. That made sense to me. My completely un-scientific explanation is that after Leo passed, I held a ton of stress in my shoulders, pushed it all up to the top of my head, and fried the inside of it. No wonder my hair fell out.

For some, alopecia comes in a spot or spots on their head. For me it was all over, and it was aggressive. For some, alopecia is a life-long condition. For me, it lasted about two years. Let me tell you, I was naiive at first, thinking that it would all come back immediately after I shaved my head. The body, however, needs time to heal.

Although my hair is back, I often consider shaving it off again – especially when summer comes. Let me tell you I LOVED my little tanned head! It also makes dealing with sweaty summer days easier when you don’t have to “worry about your hair.”

All this to say…like most things in life, alopecia is a very personal experience. Although shaving and walking around with a bald head felt right for me, it won’t for others. Although wearing a wig or hat or scarf every day didn’t feel right for me, it will for others. It’s all good – everyone needs to do what works for them, what makes them happy.

To those of you who approached me at a time when I just didn’t have it in me to talk about it, I am sorry. I did, and do, appreciate that you took the time to ask. It’s just that sometimes I got tired of answering the questions. I’m still only human.

Lastly, I really wish I’d written down all the interactions I had with strangers while I shaved my head. Not one of them was mean or insensitive. I leave you now with a few of my favourites.

1.The first time strangers said “God bless you” to me. I was producing the medal ceremonies at BC Place, and decided to go into the audience to watch. Two women sitting behind me got up after the ceremony and said “God bless you and your family.” Confused, I looked at them and repeated the same greeting. As I ran up the stairs to the concourse level and my office, I stopped and thought “ooohhhh! They think I have cancer, that’s why they said that!” You see, eventually you forget you are walking around with a shiny bald head, because it becomes “normal” to you – at least it did for me. So when these women said “God bless”, I couldn’t figure out why. It took a few moments to come to me.

2.The time I was at the Ukranian Centre with The Ladies Who Dine for perogi night. An older man (also with a bald head) came to me and asked what I did to get my head that shiny. It was so cute. Unfortunately for him I didn’t have a secret to share. I’d shaved in the shower that morning, and it was just shiny. Before leaving, he looked at me and said, “I knew it would be okay to ask. My wife and her friend said I couldn’t, but I knew it would be.” Yes. Totally fine to ask.

3.The time I was in Mexico post Games, at Bikini Boot Camp (now that’s a way to rest!). A fellow boot camp attendee looked at me and said, “Why did you shave your head?” We talked, and eventually she also asked, “Don’t you like how I just came out and asked?” Yes. Yes I certainly did. It was just a question, one borne from genuine interest. Natalie became, and still is, one of my favourite people and good friend.

4.That time I did a photo shoot, and my bestie Julie came with me “to creative direct” and lend moral support. It was a long drive out to the valley for this shoot. I had decided I wanted to commemorate this time. Like I said, I naiively thought my hair would all be back quickly. Julie not only came with me to the shoot, she came with me to pick up the cd with the photos when they were ready, and sat with me at Olive Garden as we looked through them and ate lunch. I’m so happy I have a photo of the two of us that day. That shoot also provided me with the photo I use as the banner for this blog site – it’s perfect for “random thoughts from Lise’s head.”

5.That time I was walking through Yaletown with my friend Sheena, and a man who had been sitting at a café jumped up, tapped me on the shoulder and told me how awesome my shaved head was. He went on to say he felt it was wonderful to see a woman with the strength and confidence to do that, and that I looked great. I’m pretty sure I looked like a deer in headlights at the time — I don’t do well when surprised like that. However, whoever you were, I very much appreciated it.

6.That time an older lady stopped me in the grocery store parking lot. She said she had been diagnosed with cancer, was considering shaving her head, and wanted to know how it felt. She had to be in her mid-sixties. After asking her how she was doing, and saying I hoped all would be well, I assured her it felt great. Then she asked, “But what do the men think?” I looked at her and said, “The young men like it.” It’s true. Men my age usually didn’t say much – likely skirting it because they thought it was cancer (which is why I appreciated the actions of the man in the moment described above). She shrugged her shoulders and replied, “Well, that’s good for you….” I smiled and said, “No, that’s good for EVERYBODY.”

If you have stayed with me to the end of this, thank you so much. Hopefully I’ve given you a little insight to what it means for a woman to face alopecia.

Be well.