From Worrier to Warrior

Losing your hair is bad enough, but watching it regrow and fall out time and time again is a whole new level of torture. It takes some serious endurance, patience and strength to live with Alopecia Areata but it doesn’t have to be a prison sentence.
What have I learned? Let go and get on with life. Stop thinking as if you’re sitting on death row, waiting for the whole lot to fall out. Those thoughts will surely seal your fate.

Alopecia Areata began for me in summer 2011. I distinctly remember finding a small round patch at the nape of my neck and cursing that I had developed yet another allergy to something. Maybe it’s that metal chain in the collar of the jacket I wear every day. So I cut it out with some scissors, convinced I’d found the culprit. No improvement of course. I moved on to using chemical free shampoos but the patch began to spread. What the ****. I showed a few friends but they shrugged, said it was nothing to worry about and it would probably grow back soon, maybe I was stressed. I had so much hair anyway it really wasn’t an issue; it was practically invisible unless I put my hair in a ponytail. Still, the patch continued to grow and that’s when dread and obsession set in. Thoughts soon become erratic.

WHAT IF I GO BALD ALL OVER?!
Is this karma?
I’m going to be so ugly!
What if it never grows back?
Do I have a serious illness?
I’m going to look like a cancer patient!
Maybe I actually have cancer?
What did I do to deserve this?!

You touch the patch every 5 minutes to see if any more has come out. Nothing comes away in your hand and you wonder how you’ve not found clumps of hair lying about all over the house. When did it fall out?! How could you not have noticed so much hair? The patch is cold and smooth, smoother than any part of your body because it doesn’t even have that furry downy hair. It is 100% bald. Touch again and you notice some tiny pinprick hairs. “YES! OMG it’s growing back!” you exclaim. But you’ve been fooled. Those tiny hairs that circle the outline of the patch aren’t regrowth; they’re the tell tale sign of Alopecia Areata – ‘exclamation point hair’.

Washing your hair starts to feel like a weigh-in at a fat farm. I bought sink strainer to catch the hair in the plughole as I couldn’t afford to deal with clogged drains but emptying it is more and more devastating each time. You pray there’s only a little bit of hair and that’ll be a sure sign that the falling has stopped. Instead you find half a dead cat. Sometimes I’d rub the fallen hair between some toilet paper to dry it. I was convinced that it looked worse wet and that if I dried it I could prove to myself that not much had really fallen out.

Next you have to blow dry it. Do I, don’t I? If I don’t my hair will be flat and I’ll look like I’ve lost a lot of hair. If I do, I’m potentially making the problem worse! What if I don’t do anything with my hair, will it grow back? Heat protector spray or no spray? You know the pros and cons of everything and it just makes your decision making worse! So you go through phases. A month of barely doing anything to your hair and then after seeing no results you end up styling it double the amount that you ever did just to keep it looking ‘normal’.

I became a starer. One of those girls on the train eyeing-up every other girl around me. That girl’s hair is incredible, so thick and luscious. Then you notice another woman in her 40s with male pattern balding, or somebody that is thinning on top. You notice the bald man, the balding man, the receding hairlines, the distressed hair, the over-dyed hair, the hair that needs a good trim, the hair that needs a brush, the hair that is barely there. Suddenly you’re an expert on everyone else’s hair care but you can’t seem to get a grip on your own! You swear to never treat your hair badly again. You promise the hair gods you’ll be a better person, just please PLEASE give me mine back! And you take this vow SO SO seriously.

Styling is a pain in the arse at the best of the times but when you’re half bald it is your nemesis. Mine has varied over time. Before AA I had a causal middle parting when I wore my hair down and when it was in a high ponytail I’d just scrape everything back with my hands, no fringe (bangs), just revealing a perfect hairline all round. This changed to a side parting if a patch developed on one side of my head. A bit pushed this way, a bit flipped over the other way. No more ponytails though, they revealed too much. Instead I opted for a low bun at the nape of my neck to keep the bald patch underneath hidden as well as drape the hair on top over the side patches. Even with my hair at its very worst this worked perfectly for me. The other option was the side plait. I had to keep my hair long to achieve this. But I got so sick of it. All I wanted to do with scrape it all back in a topknot and free my inner hippy. So when other girls started complaining that their hair just won’t style right I’d want to scream in their faces. BE GRATEFUL BITCH.

Enough of the ranting, that’s not who I am anymore. Back in March this year I reached a climatic point with my hair. I surrendered. Coping with AA was sucking the life out of me. I was living in a dark place inside of my head, feeling sorry for myself, hating my situation and feeling a bit like my youth, my exuberance and my existence in general was slipping away from me. Trying to hold my hair down over the patches on a windy day felt a bit like I was being pushed around the school playground. I couldn’t take it anymore. Trying to hide my baldness was exhausting.

For a long time I had been telling myself that I’d let go, that I wasn’t worried about going bald but I realised that all that time I had been kidding myself – I was still constantly thinking about alopecia! This truly became evident to me after watching youtube videos of other people suffering with AA; I broke down in tears. Their stories of going from patches to bald all over terrified me. My anxieties had been confirmed. Despite my upset I was so grateful to know I wasn’t alone and as a way of demonstrating this and contributing to the community I decided to post my own video. It changed my life and I haven’t looked back.

After revealing all of my bald patches with the world on youtube (the video currently stands at around 63,000 views – see here) I saw how ridiculous it was of me to desperately try hiding them everyday. If I could reveal all to the internet, what was stopping me in my day to day life? From then on I stopped holding my hair down in the wind, grooming my hair at work, touching it etc. I’d put my hair in a ponytail when around friends and suddenly I was so relaxed. So at peace that most of the time I forgot I had alopecia.

Before I would worry about going bald, now I could joke about it! I played about with my hair to see what I might look like bald and I genuinely laughed. I shrugged it off, if it happens, it happens! There’s so much worse in the world. More than just feeling ok about it within myself, I was actually telling people about my alopecia… and showing them! Talking about it makes it all feel okay and you realise that nobody thinks or sees you any differently. It’s nothing to be embarrassed about, it’s all circumstantial and it’s not who you are.

You know for sure that you’ve let go when you stop identifying yourself with your appearance. You actually experience being yourself. None of us can see our own eyes, mouth and nose without a mirror and finally I could no longer see my baldness. I was just Stella. Just as before AA. No more and no less. In fact no, there was one change, I became MORE confident. I was a fairly confident person before but the baldness had knocked me a little. Suddenly I was ruthlessly confident. I couldn’t give a damn. I’ve even cut down how often I wear make up. If you can’t accept me as I am, then you’re not worth knowing. It became so clear to me that you have to loose something that gives you a false sense of confidence to truly become confident.

Whilst I can admit it is much easier for me to write this now that my hair is growing back all over (thanks to the AIP diet), I’ve learnt not to get too carried away on a ‘high’. Life presents you with peaks and troughs, highs and lows. Knowing not to get over excited about regrowth is important when dealing with AA. If you get too excited and on an emotional high about regrowth it will make the next fall-out that much more devastating. We all know it falls faster than it grows back. I’ve had bald patches in various different areas all over my head. Some of these are now covered with a few inches of hair, some of the patches reoccur in the same place – particularly at the back of my head. My approach is to remain calm, detached and in the middle ground, feeling unaffected about regrowth or loss. I’m not saying don’t be happy! Of course regrowth is a wonderful thing and I feel positive about the state of my hair at the moment but by remaining in the middle, nothing can disappoint me. If it all falls out again I am prepared. I can be a confident baldy. I am a warrior not a worrier.

Watch this space! I will be posting a thorough page on the diet I am following (Autoimmune Paleo) which appears to have prompted my hair growth all over.

My video filmed back in March this year:

 

*If you find this blog helpful and you like to see more content from me, please consider a donation. The funds will help pay my tuition fees at the College of Naturopathic Medicine so that I can become a Nutritional Therapist and thus be better able to help you.*

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20 thoughts on “From Worrier to Warrior

  1. Hello, Stella! I also have AA, I am struggling with it for some years now and I found your movies. It’s great that you managed to find a way for you, but also help others with same problems or auto immune diseases. I just want to ask: you had to give up eating bread or you found a flour from which you made bread?

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      • Thank you for the fast reply Stella! I will sure won’t be a stranger in visiting and reading your blog and see how things are going for you.. hope that things go the way you want them to; reading some of the posts I saw that you are now in the “putting back” some pounds after losing them last year with the AIP diet and reintroduction of some aliments. Today is my “1st Day” -as you had yours, last year in March. (this is the 1st day of saying no to sugar) and the goal is AIP. 😉

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      • Hi Stella, I come back with another question.. I started the AIP diet (for my AA) a month ago. I am trying to lose kilograms at the minimum because I have always been pretty slim (43 kg!) so I’m doing my own little experiment: strict AIP, except corn & rice. I have 1 month of eating this way and my surprise is very big because I see some results already.. I just started to take probiotics from Solgar, 1 tb/day and I want to ask you if you took probiotics only in the candida diet period of time or afterwards too, during the strict AIP diet.. I think I will take the 60 tablets I have-that would be 2 months.I will try to continue with strict AIP + corn + rice and see if things really get better for me.. if not, I would try nt to eat corn & rice for 30 days…

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  2. Reading your blog has made me refection and think about myself, I’m pretty confident but AA has knocked me down. I’m only 18 and was diagnosed back in December but found my first patch around October, it started off pretty small maybe about the size of a quarter but then it just started getting bigger. In January I started my treatment and got my first shot of steroids and got some ointment as well, it seems to be working as my hair has started to regrow. Its fine and grayish, but at least its growing back, right?
    I can still cover it up but that’s the thing, I’m so tired of hiding it but I’m so scared to put it out there. But at the same time I’ve been wanting to put it out there just to get it over with and just let it stop controlling me, I guess I’m just waiting for that that final push. But your blog / website has opened my eyes and helped me honestly. Thank You!

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    • Hi Sendy! I’m so glad that you’ve found the blog helpful in this way! Above everything (the diet, supplements etc) I think the most important part of healing is acceptance and learning to love yourself no matter what. I know for a fact that this was the key to my healing. I get a lot of messages from people who are trying the diet but are getting so worked up/frustrated/hating on themselves that they’re slowing down the process. Our minds and the cells of our body are connected! If you put the positive thoughts there and you don’t let illness control you, you’ll soon find yourself in control of IT.
      The shots will definitely help to bring your hair back but if you can change your diet too, you’ll prevent it from ever falling out again.
      Best of luck to you! x x

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  3. I have been struggling with Alopecia (pretty sure that’s what it is anyway) for over a year now and have lost probably 70%+ of my hair which is devastating…anyway, I wanted to comment as a way of hopefully adding a bit of accountability for myself because I know I need to stop sugar entirely and although I was already very healthy, I have the terrible habit of drinking lattes full of sugar….I go for max a month without them and then end up doing it again and sabotaging my journey to a full head of hair!! Not to mention my teeth/gums are apparently not doing super well…sooo – I want to re-commit to a healthy diet (for me this means only whole grains (99% of the time only brown rice), NO sugar (except fruit), NO dairy, No processed foods….not sure if I’m forgetting anything. I also found out from a naturopath (NOT my regular doctor who said my levels were fine) that my B12 and Iron levels were low so I am supplementing for that, along with some good probiotics and Omegas, Vitamin C and D.
    I always crave sugar – and find so much comfort in having a nice hot SWEET latte at work – I don’t know how to get away from that CONSISTENTLY…
    Help keep me accountable?? :):) Thanks for your blog and videos Stella!

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    • Of course! I will try to keep you accountable. I know how hard it is to wean off sugar. Why don’t you try replacing refined sugar with more natural sugars to make it easier? Honey, maple syrup, dates and fruit purees make great sugar replacements in baking. Have you heard of the blog ‘Deliciously Ella’? She creates lots of amazing sweet treats with sugar alternatives and has healed herself from chronic illness in this way. She even describes herself as having been a ‘sugar monster’ before it! Her recipes aren’t AIP compliant because of the grains and nuts but if you’re not planning on cutting those out and going full AIP you could find them useful. Natural sugars are all AIP/Paleo compliant (in small quantities) and there are plenty of blogs out there that make delicious grain free recipes using them too. There’s a list of recipe blogs on this page: http://autoimmune-paleo.com/resources/

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  4. Thank you as a mom who has a son with aa it is another hope that this new way of eating will produce hair and just a new approach.I am so tired of going to the doctors and seeing my child continue to get shots and shots and creams.. You know the deal..my heart cries for him every time I look at him. My husband and I would trade places at any time. Our Michael is now twenty one and has about 85 percent of eyebrows and hair on head.but still we worry and worry …I try to tell Michael hair does not define who you are you are beautiful with or without hair! It’s still hard because he’s the one who crystal alone and try’s to overcome. I pray everyday there is a cure and I am going to run out now to get the book and recipes! Thank you !
    Tina Gallo 😊😊

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    • Hi Tina! I totally understand how you feel and the lack of control over it is just horrible! I truly hope you can help your son with this diet. Please be aware that to allow for healing of the gut to take place and therefore repair throughout the immune system and entire body (your hair), a minimum 30 days can be enough to show some improvements but 3-4 months is a much more realistic time scale to allow for the body to truly start rebuilding itself. Anywhere along that timeline will be where a person has rebuilt their body enough for the hair to start coming back through again.
      Best of luck! Do let me know how it goes xx

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  5. I have had AA since I stopped nursing my daughter 4 1/2 years ago (geeze has it really been that long!?) I just get spots here and there for the most part but it did get bad 2 times and the doc said I would lose it all. I was put on oral steroids and it stopped me from losing all of it but gave me many other symptoms. So I said F*@# it I would rather be bald. I came to accept it and then I found AIP and I have been doing it for 1 1/2 years. I have had 2 small set backs but I know pretty much why. I went back to the basics of AIP and then regrowth and no further spots both times. Thank you for being so open. I just heart you 🙂 Good luck on your journey and know I am doing the AIP and AA thang with you and we are going to have great lives 🙂

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    • Hi Steph! Thanks so much for your comment. It’s amazing to hear that other people are are using the AIP to treat this condition too! What were the set backs you experienced? What changed in your diet during that time? I’m beginning to make some food reintroductions at the moment but worried it might be a little too soon and I don’t want to experience any further hair loss because of it! Best of luck to you on your journey too 🙂 xx

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      • Well the first time I had been doing AIP for 7 months and then out of nowhere a spot…. So for the first time I went to see a naturapathic doc and did lots of blood work. over the next bit we discovered I had low vitamin D, SIBO, and also a few random food sensitives. We fixed all of that and I was doing amazing. Hair all growing back and blood work looked amazing. But I did have low DHEA and was still showing small signs of adrenal fatigue. Despite that she told me I was looking amazing and said I was good to introduce almonds and whole eggs and also sent me on my way with an adrenal support and a high dose of DHEA. Well…. that didn’t go well. about 3 months later I got two small spots. So it was probably a combination but high doses of hormones are not a good idea and since it all started after having a baby I should have know that. Also I looked at all my supplements and the adrenal support contained a nightshade 😦 But I also fell in love with eggs and almonds. I began eating them everyday. Also during this same period I went on a week long vacation and even though I stuck to the diet perfectly we ate at some pretty sketchy places so who knows what I was exposed to. Also because I was feeling great and my hair was growing in I started drinking coffee everyday and having a drink or two once a week……. SO I fell down a slippery slope. It may have been one thing but probably a combination. So I cleaned it all up. dropped the adrenal support and just worked harder to support them naturally. We lowered my DHEA and I gave up eggs and almonds and went to strait Aip excepet I just couldnt give up black pepper. It is just in everything! Also we decided to run some extra test. I just found out I have the MTHFR gene so we will do some things to help with detox. I also just did the very expensive extended food allergy test to see if there is anything weird that is still bothering me. but the hair seems to be growing in beautifully so we will wait and see. The thing that sucks about AA is that the hair falls out several months after the trigger. I don’t have any other signs. I don’t eat a food that bothers me and then feel joint pain or anything obvious. So next time introduce I will do 1 every six months. So I know that is what is causing it. otherwise you introduce 10 things and because it takes so long for the hair to fall out you have no idea which food did it. I have introduced several small things like pepper and mustard seed and. Just no biggies like nuts or eggs. And I will never do grains or dairy so anyway hope this helps!

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    • Oh gosh I totally know what you mean about the problem with reintros when you have AA is that the reaction is not immediate! That really frustrates me because I don’t have bad tummy reactions to things but I worry what other damage it might do. I have decided I won’t be reintroducing eggs ever because I had a bad allergic reaction as a kid which I grew out of but who knows if it’s still an underlying problem for me? Plus eggs are known to be a gluten cross-reactor (your body can mistake them for gluten) and I’ve had a gluten intolerance for a few years now. Not worth the risk… I probably won’t ever reintroduce nuts either because I’m very allergic to almond and always have been but in the past have seemed to be ok with other nuts. Strange. But again, I believe if I have an obvious problem with one nut, there must be underlying reactions to others too. It’s one big puzzle isn’t it!!

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  6. Reading this blog entry honestly feels as though someone reached into my mind and wrote out everything I was thinking & experiencing. I’ve had alopecia areata since I was 3 years old and I’ve struggled to hide it my whole entire life – I’m now 31 and it’s falling out more than ever before and I’m coming to a place where I realize I need to start talking about it and I need to question why I keep it so secret. I think because I grew up in that experience of staring at everyone else’s hair & feeling totally flawed that it’s really all I’ve ever known – I’ve never known the freedom of tying my hair up, getting my hair wet or feeling 100% indifferent in the wind. But – you are inspiring me Stella! I found your video back in March and am totally cheering for you and am inspired by your attitude. Thank you – it’s such a gift you are giving people! When I’m having bad days I’ll think about your words of letting go. I’ve recently purchased Sarah’s book and I’m looking forward to reading it and trying it. Keep doing what your’e doing! I’m sure there are many people out there invested in witnessing, celebrating and joining your healing journey.

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    • Hi Negin,
      I am so so please that you have found my video and blog helpful. It’s great to know that it works to make people feel better and provide some help. Your words are so kind and you’ve really motivated me to keep going. I have in fact just posted a new youtube video with another hair update 🙂
      I’m so glad that you’ve purchased Sarah’s book – it is fascinating!! Best of luck to you. I’d love to hear from you when you’re seeing some progress.

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