Alopecia Journey
Alopecia + Auto-Immune

The Alopecia Journey: The Thoughts​ and Emotions that Come With it.

This is an awareness post for the thoughts, fears, and emotions that people have at some point on their alopecia journey. Out of all the auto-immune dis-eases, alongside Psoriasis, it is one of the most visible because of its very clear physical symptoms. For people who are currently in a stage of new hair loss, noticing a patch, seeing new hair growth, or deciding whether to shave their entire head, there are a lot of feelings that are revealed and concealed when the hair starts to fall. This post is for you.


The Beginning of Your Alopecia Journey; When You Realize You Have it:

 

I won’t look good bald.

This is me every day in the shower losing one hair before I had alopecia!

If you’re losing one strand or thirty strands, this is every woman’s FIRST thought. When you realize you do have alopecia all you can think of is the end result. Guess what though, if you’re a woman you are inherently beautiful so with hair, bald or whatever you’ll still look damn good, I promise.

I betrayed my body.

Suddenly you think back to all the times you were angry, over emotional, ate gluten, or anything else that made you feel like you were disloyal to your health. You feel a deep sense of sadness, like you murdered something pure and beautiful.

My body betrayed me.

Yes your body does take care of you, but it can only go so far sometimes. Your body didn’t betray you. It is communicating with you about what you need or don’t need in order to be and live well.

My hair is my thing.

Women love their hair, men love their hair, and men love women’s hair. Your hair may have been your thing, but when the hair starts to fall you realize YOU are your thing. The hair was just a decoration:)

I won’t be beautiful.

Impossible. But yes we all think this. My alopecia came after 30, so I thought yep, my youth and beauty are gone forever. Turns out after 30 you get better. I’m on actually on fire…outside and inside! Working on just being figuratively on fire currently. Read about your body’s internal inflammation here.

I won’t be loved.

All those thoughts and emotions lead up to one major fear, that you won’t be loved. But, that’s every person not just because of lost hair folks. PS- Hair doesn’t bring you love, you ARE love.

I’ll buy pretty scarves.

Bonus. Who doesn’t want to wear cute scarf wraps!? I was actually relatively excited about this:)


When You Notice During Your Alopecia Journey that Your Hairless Patches are Getting Bigger:

 

Will I have to wear a wig?

For me, I knew this was going to be a no go. I can barely wear hats. My head starts to sweat (maybe because of my hair hmm..) and I don’t like itchy things. Probably why those scarves didn’t happen a ton.

I won’t look good bald.

Firstly if your patches are getting bigger it could be dependent on where you are in your hair’s NATURAL stage of hair growth. But yes, I have thought this as well.

I’ll get to buy really fancy makeup and not feel bad because I’ll need it to contour:)

Another bonus. Spending all that money at Sephora would suddenly become a necessity!

I don’t want to go to work like this.

This is disrupting my entire life. How can you look normal with patches? Well, I’m a damn professional and patches or not I’m still as competent as they come. I also knew I would become a walking billboard for healthcare, self-care, and stress. I was okay with that responsibility and here I am with this blog…

 

What’s the weather like today?

It’s a windy day today…Faaaaccckkk. Is it going to rain? Am I going look like a wet trash rat with missing hair patches?

In the beginning, I employed “patch watchers”, those trusted friends, and family to let me know when my bald patch was trying to make an appearance. After I while I really didn’t care but in the beginning, we were all on alert!


When You’ve Lived With Alopecia for a Little While:

 

I’m carrying a huge secret.

These patches are the secret I’ve been keeping from the outside world. Who I am, my beliefs, my dreams, my hopes, my wishes, my failures, my stresses, my pain, what happened to me are all hiding under my normal hair, concealing the patches. Concealing your patches is not dishonest, it just means you’re not into “fans” asking what happened to your hair. Life sucka, life happened!

I don’t want to explain how it happened.

Unless you are me who will talk about the dangers of chronic stress and emotional trauma, you may not always want to explain how you came to notice your alopecia. You also don’t have to unless you want to. Alopecia has taught you many things, and establishing boundaries is one of them.

I’m one of the lucky ones.

I only have one patch and I can hide it. There are no lucky or unlucky ones with alopecia really- just your own specific journey. You learn quickly on alopecia that the physical means less than you thought it does. You start to see the temporary aspect of all things and you are just a part of it, but it is not a part of you.

I’ll never be the same.

You don’t need to be- you’re wider, more open, and made of fire now! How funny it is that our challenges reveal the most beautiful parts of us!

Eh, I don’t even care anymore. My hair will grow back when it’s ready.

After a while I just let it be. I thought you know what, you figure it out body, you’re smarter than me anyway right? Cut to:

My hair is never coming back…. I think I’m actually okay with that.

That’s it, it’s gone forever! If it is that’s probably okay:) I’m still planning on having a great life. If I lost a limb I would still make sure I’m living a fabulous life so who cares if a little (or all) hair jumps ship?!

I’m strong as hell!

If you can do the elimination diet for upwards of 6 months, you realize how powerful your mind and body are! If you aren’t there yet- you will be. Healing your body OR letting it be are the strongest things you can do.


Things To Remember on Your Alopecia Journey:

 

Yes, your hair is still beautiful, even if you have a patch hiding under there.

You guys! Of course, our hair is still beautiful, hidden patches and all. Your beauty isn’t dependent on your hair, your clothes, your makeup- it really is inside! Your mom was right!

You don’t need to explain anything to anyone.

You may have a visible symptom, but a large number of people feel like crap inside today. (Obviously, we need a societal change)

You do/would look good bald.

You’re a woman and women are beautiful no matter what, everyone knows it, we just forget it for ourselves.

alopecia journey

No matter where you are in your alopecia journey, just know there is another 2% of the population going through it. Approximately 6.8 million people in the United States and 147 million worldwide have or will develop alopecia areata at some point in their lives. For more info on the emotional journey check out NAAF’s emotional wellness article about how to limit or manage depression.

*Stats from the National Alopecia Areata Foundation.

If it helps to join a community do it! If it helps to find an alopecia buddy- someone who you can confide in, do that! You are not alone. If right now you are overwhelmed it’s okay to let your body rest and come back to healing at a later date. However you need to feel peace within your self, let that be the start of this journey.


 

To read more about my alopecia journey and how I induced my own click here.

6 Comments

  • Shanya Cordis

    Hi Green Banana Girl,

    First off, thank you so much for your humor and levity! I recently stumbled across your blog after discovering a quarter size bald patch two days ago. I have a dermatologist appointment upcoming and to say that I am dreading it is an understatement. I have prided myself on taking good care of myself after a health scare that left me with debilitating migraines and pain in early March of this year. That experience taught me so much about trusting my body and healing myself of the emotional trauma and baggage I had been holding onto and had now begun manifesting physically. All of that to say, it seems now I’m entering the next stage of healing. Which has been a good reminder that healing is cyclical and has layers that reveal so much about our sense of worth and how we see and love ourselves. Every year I have three words that I choose to guide the way I walk in the world. This year is trust, autonomy, and freedom. I am learning so much about what that means for me, namely trusting my own body–to show me the boundaries I need to work on, what feels good, what/when to let go, and how to trust my own healing capacity. I write this to say thank you for shining the light that you are in this world and for bringing me a semblance of peace today before I head to my appointment. I’m sure you’ll see more of me on your site in the coming days 🙂

    • greenbananagirl

      Hi Shanya! You’re welcome! I’m glad that comes across because sometimes all this healing stuff can feel like HELL! Talk about universe synchronicity! I am just finishing up writing a post about how emotional traumas show up in our lives and our bodies AND talking about the many layers of healing and how some work inside/out and others outside/in- either way, healing is full of information and good stuff to honor yourself! I’m sure that must have been a profound experience in your life, I can totally relate and seeing the results of it way later on. I think by now you’ve had your appointment, I hope it went well, facing yourself head on is really tough- but you are doing it only 2 days in! I think for a lot of people when the patches start, we actually end up waiting way longer than that (weeks/months) and here you are day two, kudos! I absolutely LOVE that you use three words. What a fantastic approach. I’m going to adopt that and see what I can come up with for myself in my next stage of healing. I think mine will be… observe, create, and foundation. I’ll think more but those feel pretty good, thank you for sharing that:) You are so kind and wonderful, thank you for saying that. Sometimes we don’t know what we are unless we are in relation to others (part of my current healing) but that’s something I’m happy to be:) I am so glad and I hope everything went well… please keep me posted and reach out anytime!

      • Shanya Cordis

        Hi GreenBananaGirl,

        Thank you for your encouraging words. I learned from the dermatologist that it IS alopecia areata, which is a tough pill to swallow. It has been an emotional roller coaster these past few days, at times like a pendulum swinging between extreme opposites of acceptance and grace (I THINK I might look good bald) and on the other end, anger (at myself) and grief. I never considered myself a shallow person, but my big curly hair and I have been in a really long (and sacred) relationship. And unfortunately, we live in a society where beauty norms assault us every where we turn and I am not naive enough to believe that I haven’t internalized some of those ideas as well. I have two patches, one that has steadily gotten bigger over the course of a few days. And of course it would appear right at the front top of my hair, where my beautiful bangs used to be! *eye roll* I am trying to temper the intense fear and urge to run screaming by channeling that energy into creative projects I have been holding off on, such as this poetry book I have been stewing over for the past year, several journal articles I am excited to write and publish, and getting back to dancing (and being in my body) again. This past year has been nothing but transitions–completing my PhD, a breakup, moving to a new city, starting a new career, completing my first year as a professor, getting sick, and travel, travel, travel for conferences, to visit family, to do research, etc. No wonder my body is telling me to slow all the way down.

        Intuitively, I don’t believe the universe has in store for me to become completely bald. Rather, I believe this diagnosis is part of my larger healing journey of learning to be and accept my authentic self NO MATTER WHAT so that I can step fully into my purpose as scholar-activist, writer, and creator of beautiful things in the world. All of that to say, it still sucks dealing with this at age 31 (at any age I imagine). I will say that one of my major concerns is building a community of support for myself, where I can vent and celebrate the small gains and wins along the way. Most of my family and friends are scattered in the northeast (NY/PA) and Texas, and I’m slowly building one in Atlanta. That’s something I can focus on speaking into existence as well.

        I am currently on my fourth day of the AIP diet and time definitely feels like it’s passing at a glacial pace! But when I stop and think about it, it DOES feel good to really truly focus on my holistic health and well-being. Thank you for your guidance along the way.

      • greenbananagirl

        Hi Shanya,

        It is tough indeed. And I and many others I’m sure can relate to your thoughts about it- I actually wrote a whole post about the thoughts that come with alopecia because there are a lot:/ It sounds like you had a complete upheaval of your safety and what you knew to be safe. I had pretty much the SAME exact life experiences that really caused some emotional trauma to ignite and manifest through my alopecia. I think you are totally right on about how you feel about what this will be in your life, it absolutely was for me as well. I knew this hair loss for me was kind of the invitation to rebalance and address things, emotions, and trauma’s I couldn’t earlier on in my life. It is fantastic that you are already getting into the mindset of healing! You are looking to channel, looking to allow, and that is the best thing you can do for yourself! Mine also started around 31 so I can totally relate-perhaps we entered into the dark night of the soul to come out as our phoenix selves again, stronger and more aligned than ever! I totally know what you mean about building a community- I am actually working on setting something up like this on the site because I think it’s SO important! Still, to come I promise! 4 days that’s great! Shanya you didn’t skip a beat- you are doing fantastic! Yes, in the beginning, it feels like it’s going at a glacial pace but once you create the habit, you don’t even notice after a while, and your attention can move on to the next part of your healing. Once you realign the physical, the emotional and spiritual arise. It is a deep journey, but the whole journey is lit (it’s not a dark path like people think, there is light everywhere) because you decided to walk it for yourself and that is EXACTLY how the healing begins. Keep me posted on everything and best of luck!

  • Cecilia Caballero

    Thanks again, Greenbananagirl! This is all so wonderful. “YOU are your best thing!!” I’m feeling pretty emotional today since I just took a shower and my large patch got bigger. My first, smaller patch (it’s about the size of a quarter) appeared in December 2017 and it’s been slooooowly filling in and then I had a HUGE patch appear literally overnight by my left ear/nape of neck and that happened about two weeks ago. My dermatologist said this is called the ophiasis pattern of alopecia areata and it is the least responsive to Western medicine treatments and it may never grow back (I really don’t like this doctor’s bedside manner! way to make me feel awful). So I have a case of the sads 🙁

    After the first patch appeared this past December, I made a lot of diet/stress management/lifestyle changes but then the large happened anyway. I’m still struggling to adjust to the mindset that “it gets worse before it gets better” but I can’t help but feel discouraged. However, partly based on your last response to me on the previous post, I did stop the vitamin D supplements and biotin since I don’t think they were working anyway—it’s spring now so I’m out in the sun more for that Vit D and then I’ve been getting biotin from my diet.

    After my shower, my mind went to the “worst case scenario” that I will never regrow my hair back or that I will eventually lose all of my hair and I cried and just felt like everything I’m doing is futile. But then I try and think of affirmations and be grateful, I will keep treating my mind, body, spirit very, very well and that’s what matters the most anyway, hair or no hair, right?

    Thanks so much, you have no idea how much your blogs and kind words mean to me!!

    • greenbananagirl

      Hi Cecilia! Yes YOU are your best thing:) How can it be any other way! I totally understand emotional days, and it is such a pain in the ass when you have on patch that’s following the rules and the other one decides its going to get bigger! Yes some Doctors bring the problem, and if they don’t know a solution it’s very black and white. Here’s what I’ll add to that. I did some research on Ophiasis AA and what I found is that those areas just react to medications or treatment a little later than other areas on the scalp. So maybe just add more time to your mindset and open up space in yourself for a longer healing time if that feels good. Also it’s totally okay if your Doc is not a good energetic match for you, you want the truth but you also want hope- because hope is number in healing anything. Be realistic but be optimistic ya know;)

      Yes it’s rough when we make all these changes and then we still see the hair fall! “Hair did you not get the memo! I’m healing you!” It really is because the damage has been done already to the follicles, truly, and it just has to come out:(. The most important thing is to track your energetic triggers and see if you notice your hair getting hotter, or suddenly tons of dandruff or more hair fall in relation to something, someone, or certain thought. Trust me I know it’s a really tough concept to accept re. getting worse before it gets better! I have just been happily brainwashed with it since birth (#growinguponhomeopathy) but otherwise, I would probably feel the same way. I just also absolutely know it to be true and I have seen it outside people and with animals. Even with my horse who was also struggling with inflammation, it got a lot worse before it got better. And everyone told me this is the end- but here he is and I’m riding him again slowly but surely. He’s also on the natural route:) It’s tough to understand because the body does not work within our mental realms because it’s far too intelligent. We are just now really beginning to understand it. Yes get out in the sun! Moderate amounts of course but it was such a big friend to me for my healing. Yes, especially if you are on a super nutrient dense diet- you are most likely getting those supplements in bulk fro your food sources. Trust yourself and see what feels good for you.

      And it’s totally okay that you went worse case scenario- that’s actually good for your emotional health because it allows you to accept before you have to, create a plan, and come to terms on your own terms. Trust we have all been there- that’s why I wrote that post on our thoughts and emotions because of course, we all have to think that! I tell people all the time- that this whole alopecia stuff is really changing everything about how we think, not we are, but definitely our thoughts. Results are important absolutely but as you go you see how much else there is that you had no idea. You really rock back into yourself and rest, and I know for me I don’t think I ever did that. I “see” things I never did before and I’m pretty self-aware but now I’m more energetic malleable in really good ways. I also think its totally okay to feel those thoughts for a time too, so don’t beat yourself up for really freaking wanting your hair to grow back! Plus to be fair it’s sometimes hard to be grateful when you see your exterior crumbling, your interior feels like death, and you are slowly losing control. Feel all the feelings and then start to let them be where they are, they can still be there, but after you’ve accepted them, totally okay to give them less attention.

      You’ve already had so many gems just in this comment that show you are on your right track. You recognized something about your Docs bedside manner that doesn’t align with you (most people don’t), you made an adjustment that worked for you (biotin and Vit D), and you are planning to be okay no matter what.It’s hard to get there and here you are already! Thank YOU so much! This is something for all of us and trust me someone is going to see your comment and relate to it which is so important. This is really a place for all of us who are on fire and walking through it;)

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