It's Not Just Hair

For most of my adult life, I have aligned my physical identity as someone with fantastic hair.

My college friends had a running joke. The pantheon of all-time great hair list:

1. Farrah Fawcett
2. Patrick Swayze
3. Jeff Sample

That’s it. That’s the list.

As a male, hair loss is expected. As much as I hoped to keep those luscious locks, I’m a pragmatist at heart, bound by the rules of logic and science.

Science says I lose.

The Beginning

In March of 2018, I was battling a particularly stressful period of my life. My mother was diagnosed with stage 3 ovarian cancer. My new career in Management Consulting had me traveling across the country every week, meaning I was gone five days a week and barely got to see my fiancee. That travel then triggered a bout of pneumonia, leaving me stranded in Denver with a high-grade fever, paralyzing chills, and alone.

A few weeks later, a half-dollar-sized bald spot appeared on my beard. It was something I hadn’t experienced in over ten years.

It was alopecia, and it was back. And for the first time, it was on my head.

The problem with alopecia is its unpredictability. There are no known causes, no cures, and no warning signs. It shows up when it wants to show up and takes what it wants to take.

Stress and food allergies are potential causes but aren’t proven to be linked. Taking care of your stress levels, eating healthy, ongoing steroid injections, and a few experimental topicals are all you have in your arsenal.

My only hope was that it stayed contained to areas of my appearance that aren’t focal to physical appearances, such as the scalp, eyebrows, and eyelashes.

Trigger(s)

In April of 2019, I was recently married and starting a new job. Alopecia, to that point, had spread to about 25% of my face. This meant no more scruff and an absolute need to shave my face daily to avoid the now noticeable bald space.

I was no longer donning those luscious locks due to some natural old age creeping up (and my hairline creeping back), but otherwise, fortunately, restricted the loss to primarily small portions of my facial hair and some arm/leg hair loss.

Then, everything started to spiral.

I had a severe neck injury that left me with cervical radiculopathy, leaving my right arm useless, and in physical therapy for six months.

I had a real-life epiphany during a sales meeting that abruptly had me entirely rethinking my career in advertising.

I left my job in February of 2020 to transition to a new industry in education during a hot job market.

Three weeks later, we were in a pandemic. And that transition was immediately put on hold.

Everything Escalates

By April of 2020, 75% of my facial hair was gone.?

We’re panicking. My wife and I are literally discussing completely changing our lives, quitting our jobs, and moving somewhere with trees and a simple lifestyle if it moves to my scalp.

At this point, my diet consists of nothing fun in an effort to slow the spread. No dairy, no gluten, no nuts, no seeds, no coffee, no sugar, no eggs… basically nothing good except bacon. God bless bacon.

I’ve also decided to not only transition into this new industry but start a company.

I am an insane person.

We are in a pandemic. I have started a company. And I am battling an incurable disease every day of my life.

I’m eating insanely healthy, meditating daily, exercising as much as possible, given the circumstances of my career and the pandemic, and we’re stuck in our apartment in San Francisco with limited human interaction.

The Tipping?Point

Then it happens.

In May of 2020, the first small patch appears on my head.?

We are scared shitless about what is going to happen.

Both my wife and I have identified myself as this person with hair. It’s who I look at in the mirror every day. It’s who she wakes up to in the morning, the person she sees when I make eggs, the person she teases when she sees me spend 20 minutes blow-drying and getting it justtttt right.

We now know it might rapidly go away.

And I am now facing an identity crisis on two fronts and likely have to make a choice between one or the other.

My vocational identity: Continue pursuing my new career and venture to explore an area I’m deeply passionate about and a problem I want to solve alongside a high-stress environment.

My physical identity: Drop everything to focus on a low-stress environment to potentially preserve my appearance.

The Decision: I make a conscious effort after a week of reflection and choose to focus on my vocational identity.

I will not be stripped of the person I want to be because of a disease.

But I hope that the worst-case scenario doesn’t play out…

In May 2020, I’m prescribed experimental drugs as a treatment for alopecia known as JAK inhibitors, which are FDA approved for other autoimmune diseases.?

My insurance denies them. I begin my fight to get them approved.

Acceleration

It progresses, accelerating weekly.?

Every morning I wake up, hair is falling out of my head and new spots appear. My physical identity is rapidly being stripped from me.

There is nothing I can do about it.

It’s impossible to describe what this feeling is like. You wake up, and your physical identity is sitting in the shower, on your pillow, in your sink. Every day you fight a battle, and you don’t know who your opponent is. It’s like taking a gun blindfolded and firing into the sky wildly, hoping to hit something. Meditation. Healthy diet. Exercise. You fight back, but nothing works. Every day a new piece of you is missing. It’s torture.

By September it’s spread to both my eyelashes and eyebrows. I’m now at 30% scalp loss. The only way to cover the patches is with a hat.

I have 100% facial hair loss.

I order a wig and bring it home to try on in front of my wife. It makes me feel worse.

I have a complete meltdown. I’m on the ground crying. My wife doesn’t know how to help.

I am an extrovert, and I refuse to go out in public.?

I then recognize that my altered physical identity is having an impact on my internal identity. It’s terrifying.

I reorder a new wig that attaches to the back of my head, and it is a considerable improvement. I’m now comfortable again seeing more people.

Devastation and?Loss

In October of 2020, we decide to move to a new home.

Everything is rapidly changing for the worse.

My wig no longer covers up all of the bald space. I have patches on all sides of my scalp, including the front. I have approximately 70% total loss and rapidly changing.?

My eyebrow loss is visible. I’m now filling it in with makeup.

My eyelashes are falling out rapidly. I get glasses to transition to a new look.

My arms and legs are at 90% hair loss.

My nailbeds are also crumbling as a fun bonus feature of alopecia. I can’t even open a soda can without them splintering in half.

I look like I’m dying.

At the same time, my company is dying. I have to make a crucial decision with a co-founder to salvage what is becoming apparent as a massive market opportunity and a problem I’m deeply passionate about solving.

But my life is falling apart, and I have little control of the chaos.

The Holidays

I don’t want to see anyone. I’m devastated at what I see in the mirror. I don’t even know who I’m looking at anymore.

My wife hardly recognizes me too. And that makes everything exponentially worse.

We’re in a new home, and it’s supposed to be a special moment, but we’re sitting in tragedy. We’re both crying — all the time.

I’m fighting insurance companies and state department agencies and talking with lawyers to figure out my prescription situation.

I’m saving our company, and we’re seeing progress. We’re in a pandemic, and I’m happy I can hide behind Zoom.

It’s Thanksgiving Day and we’re having dinner. I wear my hat the entire time. I can’t let them see what I’ve become. I’m ashamed, in shock, afraid, devastated… I don’t know how to act like myself. I feel deformed and broken.?

Dinner is unusually quiet. I know why.

The next morning I put on my hat and my wig, and I lay on the floor of my in-law’s home, and I cry. For an hour. Everyone lets me.

My physical identity is shattered, and it’s now destroying my internal identity. We know at this point that there is nothing we can do to stop this disease except potentially experimental drugs, and I’m in a waiting line, still, five months later, fighting battles on all fronts of my life.

On December 19th, I have 98% scalp loss and near-complete eyebrow and eyelash loss.?

I decide to shave my head.

My wife and I hold each other in a moment of intense raw emotion.

It’s over.

But I immediately feel better. I wouldn’t be able to watch my hair fall out any longer. Alopecia won the war, but at least I was finally in control of an outcome.

We are numb, devastated, and traumatized.?

And we are preparing for Christmas…

On December 23rd, I walk into my in-law’s home for Christmas. They look like they’ve seen a ghost. I just want to hide.

On the morning of Christmas Eve, we receive a phone call from the Department of Health in California, who approved the appeal of my health insurance’s denial of coverage.?

I bawl uncontrollably. The hardest I’ve cried since the beginning of this traumatic chapter of my life.

I finally won a battle.

But I do not recognize who I am anymore.

It’s Not Just?Hair

When you describe to others what you’re going through with this disease, the most common reaction is, “well, it’s just hair”.?

It’s not. You are slowly watching a piece of your identity taken from you daily. You battle every day, and you lose. And it impacts everything around you.

Alopecia is a disease. It impacts people differently and has different levels of severity. In my case, I was nearing alopecia universalis (which is complete hair loss across your entire body) until the JAK inhibitors started working.

After I had complete hair loss I had multiple people look at my ID and not believe that the person in that photo was me.

I had a child ask her mom “why does that man’s hair look like that?” in a grocery store when I looked my worst as they walked by.

You’re conscious of how your physical identity is perceived in the physical space around others. While your friends and family treat you the same, first impressions are entirely different than they used to be. You’re treated differently. And you feel it. And that changes you.

It’s an excruciating mental game to not only go through that traumatic experience but to live in a body that you identify as fraudulent, stolen, and deformed, with a physical world that operates differently than it used to.

Acceptance &?Recovery

When both my wife and I have dreams still to this day, the majority of the time, they’re me with hair, the appearance of the physical identity we associate with myself. We dream of our travels together, our wedding, and ‘melatonin-created-adventures’ in new lands as the person we’ve identified.

In the real world, I still hurt when I look at our travel or wedding photos.

I often look back at that fork in the road and the decision I made. I’ve told this story to a few individuals, and they’ve asked, “do you regret deciding to continue with the company?” The answer is no. I have never once regretted my decision.?

It was more important that I didn’t let alopecia control every aspect of my life, particularly stopping me from being the person I wanted to be.

Alopecia is not who I am. It is a disease that I deal with. It is brutal and is a work in progress for me as an adult to continue to deal with my physical identity loss over time.

But I am not a victim, and I do not identify with my disease.

I am Jeff Sample. I am a loving husband to my gorgeous, caring, and dare I say, patient wife. I have an infant son who is an insane person, who I love unconditionally. I pride myself on being honest and authentic, empathetic and compassionate, and people tell me I’m funny (and they’re right). I am the Founder of Clicked, where we help people find and pursue meaningful careers. I love golf, whiskey, traveling, snowboarding, bad karaoke, and sushi. And I live with alopecia, a disease that I will continue to deal with as a significant piece of my new physical identity for the rest of my life.