My Alopecia Story

This post is adapted from a chapter in my eGuide, Hair Loss: It’s Reversible without Drugs, Creams, Injections, and Steroids, which you can download here.

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I’ve had alopecia, off and on, for 35 years. I got my first half-dollar sized bald spot on top of my head right after I’d gotten a super short pixie haircut. I was in middle school. It was devastating. 

[See slideshow at the end of this post for more photos.]

I was on the swim team and there’s nothing like wet hair to display bald spots in all their glory. (No one else was wearing a swim cap, so I wasn’t going to either.) 

I have a blood relative who has alopecia universalis (total hair loss). The dermatologist said, “This is like lightning striking twice in the same place.” I blurted out, “You have to be kidding me.” I was 13. 

I proceeded to get the standard “treatment” for alopecia—cortisone shots in my scalp. That didn’t last long—these corticosteroids really messed with my cycles and moods and my instincts told me that it wasn’t a good idea to take synthetic hormones, especially during puberty.

So I stopped. I told my mom, “I’d rather go bald than ever get one of those shots again.” I was fully prepared to lose it all—and be okay with it. 

During these three-plus decades, there have been significant swaths of time where I’ve had no spots. That said, there were certainly times when I was experiencing a lot of overall/diffuse loss. 

Spots would reappear, seemingly out of nowhere. As I got older and started to learn about health and nutrition in a deeper way, including getting my Hashimoto’s diagnosis and learning about supporting and balancing hormones and the immune system, I couldn’t tie the timing of my spots to anything—I wasn’t experiencing additional stress, digestive distress, increase in Hashimoto’s antibodies, or other symptoms. Or so I thought. 

And thankfully, up until my mid-40s, my spots always regrew—quickly. More often than not, a spot would be growing back in before I even knew I had it. 

I’ve seen many more spots in the last few years. To say the least. 

In fact, two years prior to this writing, one third of my head was bald. (My mathematician husband said it was more like 40%.)

I was on the slippery slope that I thought could happen one day (total baldness), but after 30+ years, it hadn’t—I thought I would just have to deal with a few spots now and then. 

I’d previously been fortunate enough to have the kind of hair that made my spots easy to cover. It’s otherwise thick and curly, so I really didn’t give my alopecia a whole lot of thought. 

But I was in new territory now.

I had quickly graduated to the ophiasis pattern, which is one of the more difficult alopecia patterns to reverse. It’s where there’s little to no hair above the ears, wrapping around the back of the head.

I had just enough curls on the top and sides to cover it—sort of.  Let’s just say that when the wind blew and I wasn’t wearing a hat, I got a lot of stares. I’d just smile and keep walking. 

I eventually started thinking about what new hairstyle I’d wear—I was going to go “all out” and adopt a radical new ‘do (a wig). 

Granted, those “bad” years were riddled with stress. I lost both of my parents and my brother—all at the same time that I was a first-time mother and working hard on my Essential Thyroid Cookbook. I’m not looking for sympathy—just stating the facts.  

Oh yeah, and I went through early menopause at 46. What a shocker. This really bowled me over. But in many ways, it wasn’t that surprising.

Perhaps my alopecia worsening and going through menopause was coincidental? I don’t think so!

Thankfully, I was relatively unscathed from the standpoint of hot flashes, night sweats, moodiness etc. It was pretty uneventful—except for it being a contributing factor to my massive hair loss.

When another shiny circle appeared, I’d look at the nearest spots and think, “Okay, these spots are going to grow together and create another clear-cut on the side of my head.” That’s essentially what happened—creating the ophiasis pattern. 

I was hard on myself. What am I doing wrong? What’s the
imbalance that I 
don’t know about? How could I have prevented this?

With Lisa, my Essential Thyroid Cookbook co-author, early Jan., 2017. Perhaps it doesn’t look that bad, but it was. Compare it to the photo below. >>

Oddly, another part of me kind of didn’t care because it could have been a lot worse. I’m wasn’t in pain or experiencing the symptoms of other autoimmunity, like Hashimoto’s, with its lethargy, constipation, brain fog, etc. And I was cruising through menopause pretty easily.

Yet from a professional standpoint, it made me wonder if I was fit to coach others around their autoimmune conditions. Like, if I can’t get a handle on my alopecia,
who am I to help others with their autoimmunity?

But things don’t work that way. You don’t have to be perfect
to help others. 

Today, I have a nearly full head of thick hair. I’ve used no drugs, hormones, or pharmaceuticals. 

This photo was taken on June 1, 2018 (with Andrea Nakayama). For the first time in years, I’m able to grow my hair out again! >

My complete story is too involved to share here and I don’t feel it’s important to outline all of the personal details because if there’s anything I’ve learned in working with alopecia clients the last four years, it’s that everyone’s contributing hair loss factors are unique. Sure, there are more often than not some common denominators, but it’s been my job to uncover my own factors—and to help my clients uncover theirs.  

Are things perfect for me? Not quite. Alopecia is one of the most unpredictable and difficult conditions to manage and like I mentioned, the ophiasis pattern is particularly stubborn. 

But I no longer need bobby pins and I get to part my hair down the middle once again—something I couldn’t do for a long time. I only have a few small-ish spots—and they’re all filling in. Unlike before, no one knows I have alopecia.

​​​​​​​As far as I’m concerned, I now have a full head of hair. And I plan to keep it all. 

Click on each photo below for a short caption.

  • The start of my ophiasis pattern.
  • I had these spots for about three years, even before I graduated to ophiasis. I thought they would NEVER come in, but they have.
  • The start of my ophiasis pattern, other side.
  • This was another longtime spot that I thought I would have to live with, but it's grown in.
  • Late summer of 2017 (proofing the printing of my Essential Thyroid Cookbook!), not long after everything had come in. It's one of the only sideview photos I have. What you see at my neckline was NOT there for well over two years.

Comments

I have Scarred Alopecia and skin writing, which has a more technical name that I can’t ever remember. I thought it was stress causing all this, not too sure though. I’ve researched Hoshimoto’s, thyroid, had issues with infertility in my early 40’s and going through peri or menopaus. My sister has Lupus, so I’ve thought about that. Also experiencing stiff joints to the point of pain when I wake up or sit idol and try to walk afterwards hurts my ankles. I use to run and many days I have no energy and desire to do much. 

Hi Lupe, cicatricial alopecia and dermatographic urticaria? I’m telling people that I don’t help with cicatricial alopecia, but I actually believe that it’s treatable. The medical community says that there’s nothing you can do about scars, but lasers and certain essential oils have been shown to eliminate scars. If the scars can be removed and the follicles signaled, I don’t know why someone’s hair wouldn’t re-grow. But I don’t have any case studies or specific examples for you, sorry. I’m going on instinct and the disbelief that it can’t be healed.

 

Oh my gosh! I feel like I just read my story, except I was 27 when I found my first bald spot. I've not yet been diagnosed with hashimoto's but I definitely have my suspicions. I am 58 now and a full time wig wearer. I had totally given up on the chance a it being reversed until I read your story.

Hi Dawn, people with alopecia may or may not have Hashimoto’s. You may want to check out the recording of my Preview Tutorial for my upcoming 4-part Reversing Alopecia course. If you enter your name and email above (left), you’ll get the recording, which is only available until tomorrow (Sun., July 1).

Hi Jill, thank you so much for sharing your story, it fills me with hope!

Unfortunately I missed the class on Reversing Alopecia, I’m so bumped about that. 

I was wondering if you have tried/mentioned in the class the use of antihistamines (long term). I’ve personally seen positive effects, and have been advices both by my nutritionist and dermatologist to keep taking it for at least 6 months. I find it hard to believe that there’ll be no side effects. I’m very curious as a I’ve heard repeatedl, that it’s ok to do so.

I’d love to hear your opinion on this. 

Thanks For your hard work, it’s extremely inspirin! 

Thanks, Daniela.

Yes, there is a connection, but I’m totally against long-term anti-histamine use. Most cross the blood/brain barrier and some can exacerbate intestinal permeability, which is the last thing you want when reversing any autoimmune condition or hormonal imbalance.

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