I know it has been so long since I have posted, and so much also has happened. I am still struggling to really go deeply into it all, but I have made some posts on Instagram and a YouTube video to discuss what I have been dealing with this past year.
Long story super short. My father passed away last year, and I recently was diagnosed with a NEW type of hair loss. This is of course in addition to the hair loss I have had for 24 years – female pattern baldness (androgenetic alopecia). I now also have a variant of alopecia areata. I see it referenced as Diffuse Alopecia Areata and also Alopecia Areata Incognita, I’m truly not sure if they are the same, but they are seemingly used interchangeably online. I had no idea it was possible to have more than one type of hair loss. Well, it is.
My body went through so much last year… SO much. My health suffered tremendously, and I share in the video some snapshots of how my face was looking during this time. This full on assault to my immune system is what is to be believed to have very likely triggered this episode of alopecia areata. It does run in my family, both of my brothers experienced patches of alopecia areata on their beards (now resolved), and I have a cousin in Panama who had alopecia areata on her scalp. It was there, just waiting…
I vacillated over the past month on how I would treat it, if I would treat it. After a lot of reflection, I have made the decision I can live with, and I’m declining the use oral minoxidil, (and Dupixent, and Olumiant for that matter). I am fine with the steroid injections, and I have already had 2 rounds of those.
I had previously refused oral minoxidil for my Androgenetic Alopecia, and I stopped systemically treating my female pattern baldness in 2013, after I got off my last hair loss medication (Aldactone 200mg). I have since only utilized PRP hair loss treatments since 2009 (done every 4-5 months).
I have always told women, when choosing ANYTHING in regards to how they will treat their hair loss, to make the decision they can live with, and I am taking my own advice.
I hated being on hair loss meds, absolutely hated it, and I felt free being off them, liberated. I felt free finding a new way to live with my hair loss, which included chopping my hair super short, wearing wigs, and doing my PRP therapy to help slow the progression.
That was my program and I’ve been at peace with that for VERY long time. I accepted long ago, my hair loss was progressive, my hair was never going to return to what it was prior to my hair loss, I let go.
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When confronted with this new hair loss, and then having treatments presented again, I had a brief pause. I knew what I no longer wanted to do, what I got past, but since this was “NEW.” I actually had to think about it. After a month of reflection I have opted to not take any hair loss medications to treat this new hair loss, regardless of how far it progresses.
Watch on YouTube – For a lengthy deep dive into how this came to be, and my thought process behind all of it.
I realized that while this was new and different, it still didn’t change how I felt about taking medication at THIS point in my hair loss life. After 24 years of dealing with female pattern baldness, 11 years of wearing wigs, it doesn’t make any sense to treat this. In the best case scenario I’d still be wearing wigs.
This hasn’t really been easy to deal with, it changed a lot for me, including how I have felt comfortable and learned to wear my wigs for the past 11 years. I’m having deal in different ways now. Adjust.
And it is extremely likely I will shave my head this year, because seeing the absolute mess of devastation on my scalp that has resulted from this, seeing MYSELF this way, hasn’t been healthy. It’s a new part of my journey, and one I was most definitely not expecting.
We are all in different places of our journey and have to find what works for us. I am not against treating hair loss, I just firmly believe women always need to do their research and make informed decisions, and really THINK about it. How will you feel 5 years down the line, 10 ? I know I felt trapped and horrible on the meds I was taking, and do regret some of them. It’s not always possible to avoid regrets, but we can learn and take time to really self reflect, and try to avoid rushing into anything.
I wish I had something more uplifting to share, I really do, but this is life and life isn’t all rainbows and pretty wigs. It’s life. I know I will get through, I know what I have gotten through the past 24 years. This too, I will get through and be stronger for it.
We evolve, we adapt… that’s how we… survive.
Sending Much Love To All !
XOXO
~Y
Reference links to things discussed in the video / podcast:
PRP Therapy:
https://www.womenshairlossproject.com/category/prp-therapy/
Alopecia Areata Incognita:
https://donovanmedical.com/hair-blog/2017/5/19/alopecia-areata-incognito
Steroid Injections:
https://donovanmedical.com/hair-blog/aa-injections
Low Dose Oral Minoxidil:
https://www.aad.org/dw/dw-insights-and-inquiries/archive/2022/low-dose-oral-minoxidil-alopecia
Dupixent
https://en.wikipedia.org/wiki/Dupilumab
Olumiant
https://en.wikipedia.org/wiki/Baricitinib
Ketoconazole
https://en.wikipedia.org/wiki/Ketoconazole
{ 8 comments… read them below or add one }
Thank you for writing and letting us know how you are. You helped me accept my hair loss and gave me the dignity to move on to wigs. You have been holding many of us up, and not hearing from you worried us. I am so sorry for your loss. There are no words when you lose a parent. Please know that you have an invisible group out there who owe you their self-esteem and would do anything to pay you back.
Thank you so much Gretchen, that means a lot to me. XOXO
Thank you for your update, I have AGA and have been following you for over 10 years now, and you are an inspiration! I so agree with Gretchen, you have been holding many of us up! I come here to check on your post when I am down, and I have learned to accept and moved on with hair topper, I would do anything to pay you back for what I have learned from you, and for what you have done for us. I am so sorry for your loss, I lost my mom too last year and I know how hard it is. But please keep going. XOXO.
Thank you Hope. I’m so glad you have gotten to a place of acceptance and that I had a part in that for you. XOXO
Thank you for your post. I am so sorry about the death of your father. In fact, my mother died January 4th, so I am right there with you. But at 63 years old I have come to terms with the hair loss I have had for 35+ years, which has left me with very little hair at all, but I am otherwise very healthy – am also a cancer survivor and feeling like my best years are still ahead of me. I realize that what makes us beautiful is joyfulness, and just being in the moment – thankful for all the little things. As far as hair, I wear silly hats – part of just having some fun. I crochet my own hats using lots of fun colors and fibers – and I am going to make a new hat with yarn “braids” . I have tried wigs a couple of times, and I find that wearing fun hats is so much simpler and easier. Anyway, I used to wish all the time for a head of beautiful hair, but I realized that if I had one wish to make – there are much more important things to wish for. Thank you for sharing your journey. And may your beautiful smile light up the world
Thank you Maya, and I’m very sorry for your loss. It’s true, the further down the line you get that “one wish” changes, like you said, what seemed like the ONLY wish you would ever want.. morphs into other things as you learn to accept your situation. I love that you found hats to be more your thing than wigs, they are simpler… that’s for sure. I am a wig wearer, but when not, I wear beanies. XOXO
I am so sorry your loss. Losing a parent changes everything and there are no words to express the grief. We are all here to hold you up and send you our love and support. Thank you for being so honest and open about your experience and sharing with us the way you have coped and learned to live with this hair loss life.
Thank you Alice, I really appreciate your words and support. xoxo