My Baldy Bits and Me, My Journey with Alopecia Areata

This is the blog I wish I had found when I first spotted a bald patch on my head and my heart gripped with fear.

It started with a small patch of partial alopecia areata in 2001.  It came after a particularly stressful time with work:  I’m not ashamed to say that I had a difference of opinion with my boss at my first proper job, and I was effectively sacked at the end of my probation period.  Tough times. Three months later, a bald patch about the size of an avocado grew.  I went to the doctors and was prescribed a shampoo that I was allergic to, so that didn’t work, and then referred to a dermatology consultant.

3 months later I had the consultant appointment and one treatment option was to have the patch injected with steroids (a side effect of them is excessive hair growth).  Within a month it grew an inch and I didn’t think anything further about it.

Then, in 2012, as I dried my hair in the changing room after a swim, I noticed a small bald patch on my temple.  I felt devastated, but also heartened by the fact that I knew how to fix it.  I promptly saw the GP and got the consultant referral.  By the time that rolled around, I had more than one patch and the original one had grown bigger.  I explained my situation and asked to get an injection.  “Oh we don’t do that anymore” was the reply.  I felt stunned.  I’d thought that would have been the answer.  She explained that it was apparently only effective in 5% of patients and the other side effects weren’t great.  I went away with a steroid ointment in hand (I’m allergic to the creams), pretty sure it wouldn’t work and wondering what I should do.

I looked into getting the injection privately. But then a truth hit me: surely injecting your head with steroids is not a good thing to do, unless you really need it?! So I made the first of many choices. I chose not to pursue that avenue.

The alopecia continued.

Over 9 years later, it’s still going.

I’ll get a patch, it’ll take between one and six months to regrow.  Meanwhile, when that patch has started to regrow, another will start to appear. Usually it’s at my temples, around my ears or round the back.

I’ve worked extremely hard on my mindset around it. Sometimes it has got me down. Sometimes I’ve felt very embarrassed and scared to go out on a windy day.  But most of the time I have accepted that it’s my body’s way of expressing an issue and although it might be a bit embarrassing, it causes me no physical pain. It doesn’t stop me getting out of bed in the morning; it doesn’t stop me from living a full, joyful and interesting life.  So all in all, it could really be a lot worse.

“You hide it well”, people often say to me when I tell them about my alopecia.  And it’s true; most of the time it doesn’t show that much.  Which of course is a lot easier to deal with than alopecia universalis; that is a very different kettle of fish.  On a couple of occasions, it’s fallen out round the front of my hair. At both times, I chose to cover it up for 6 or so months, wearing a hairband or a fake fringe with hairband. That is exhausting.  Hairbands every day get very boring.

“Is it stress related?” is usually the next thing people say.  

My answer to that, after 9 continuous years of experience, is Yes and No.  

Yes, my hair has fallen out more after times of extreme stress.  Often this is a delayed reaction too, happening about 3 months after a particularly tricky time.

And no, I’ve not been hugely stressed all the time for 9 years, thankfully!  Life has had it’s challenges, sure, but stress is not a constant visitor.

“Have you seen a specialist?” is another question. The answer to which sometimes raises eyebrows, but it’s about choice again.  There is no cure for alopecia.  There are treatments which might help, but none which are a sure fire way of sorting it.  There are LOADS of different lotions and potions you can buy, most of which are costly and most are aimed at those experiencing androgenetic alopecia (male or female pattern baldness) and most of these don’t work.  Also, I’m allergic to a lot of shampoos and conditioners.

So I made a choice.  I could spend a fortune on specialists and treatments which are likely to a. not work and b. make me itchy, or just not give myself the bother.

I chose not to bother so no, I’ve not seen a specialist.  Sometimes I wonder if my stubbornness is preventing me from finding a way to stop getting baldy bits, but when I think it through rationally, I know I’ve made the right decision.

I have found that vitamin D3, especially when taken with fish oil, does speed up the regrowth though.  But that’s the only thing I take to counter it.

Earlier this year, after several months of significantly improving my health through what I eat, I started to read up on the microbiome and gut health’s role in auto-immune conditions, of which alopecia areata is one.

Dr Mark Hyman wrote an article suggesting that a particular gut bacteria might be connected to alopecia.  And that particular bacteria, Helicobacter pylori, is irritated by wheat.  Thinking I had nothing to lose, I decided to reduce the amount of wheat I was eating.  I didn’t cut it out entirely, but reduced it dramatically.  It was hard.  My empathy for those who need to follow a gluten free diet expanded exponentially.

I stuck at it for a couple of weeks and definitely saw an improvement in the amount of hair that I was shedding.  But then there was a weekend away, a rare and delightful treat after covid has kept us at home, and I decided all bets were off and I would eat what I wanted.  Turned out that involved a shed-load of wheat.  

My initial thought on the wheat experiment was what do I have to lose?  The answer? A lot of hair.  After that fortnight of very little wheat and then a weekend of indulgence my hair fell out super quick.  Within 3 weeks there were two bald patches, bigger than 50p’s on my temples, a bigger patch round the back and various 20p sized ones all over. Bugger! (Excuse the French, but it was so annoying it entirely justifies a wee swear).

It might have been the wheat.  It might have been a delayed reaction to losing my dad and then going into the winter lockdown.

Either way, it was a bit depressing.  But then I worked through it and realised here was another turning point where I had a choice.  I could either cut wheat out of my diet, giving up regular pizza, cake, sourdough, fresh pasta and so on with the possibility of having a full head of hair, or accept that the baldy bits might be here to stay and eat the pizza.

I chose pizza.

Having that choice was wonderfully empowering.

I’ve stopped chasing unicorns on the internet, trying to find that cure-all thing which will make my baldy bits a thing of the past.  My commitment now is to being a healthy as possible: eating as many different veggies as I can each week; exercising more (doing exercise I actually enjoy rather than what I feel I “should” do); taking time out to potter, to play and to rest.  And I feel pretty blooming good about it.

What’s more is that I think, should my hair fall out round the front again in the future, I won’t wear the hairbands.  This is part of me.  I’m OK with that and if, by chance, someone suffering something similar sees a confident, happy woman strutting about with her baldy bits flashing, and if that gives them a little boost, then I would be over the moon.  

I’m not searching for a cure or something to improve it anymore.  But I am giving a lot of love and nurture to my mindset, to ensure it stays positive. And that’s something I could help you with.  If you’ve made it this far reading this blog, and you’ve got something going on which you feel is holding you back, whether that’s alopecia or something else, do book in a free session to chat to me about it.  I’d be delighted to speak to you and explore if I could help.

Throughout September I’m offering a free hour of coaching in return for a donation to Alopecia UK.  There’s so much more research needed to help get to the bottom of this condition.  If you’ve always fancied giving coaching a shot, here’s a chance and you’ll be contributing to a great cause at the same time.  If you don’t want a coaching session but have a spare fiver or whatever, you can also donate here.

Here's the link to my fundraising page, if you can chip in, that would be ace.

Thanks for reading!

Love Sarah and her baldy bits x