Alopecia and other forms of medical hair loss can be a dark and perilous journey. It is one that is often misunderstood by those around us which can also make it feel lonely.
I recall feeling earlier on that it would consume my entire life and that I would never be able to live a normal life without worrying about scalp showing. I missed out on many opportunities in my late teens and early 20s because of fear that the wind would blow the wrong way, that I was going to get caught in the rain, and couldn’t be caught dead poolside. I would pass up social outings for the very reason of not wanting to spend hours primping and fluffing for (at best) mediocre results.
Life carried on, and continues to carry on, as it must with each of us. It goes without saying that the world doesn’t stop because we are sad about losing something important to us, but seemingly trivial to others. There is a difference between repressing feelings about hair loss, and embracing the journey. I spent years of my life just burying the feelings deep. I would look in the mirror, do what needed to be done, and then basically carry out my days in denial about the loss itself, and the toll it took on me emotionally and psychologically.
I would also cycle through “not caring” (ahem *pretending not to care) about my hair, and then frantically searching for solutions for regrowth and volume. I found products that temporarily masked the sting such as dry shampoo, scalp powders, and hair fibres. Hair extensions were a complete waste.
Then one day, down the bottomless rabbit hole that is YouTube, I stumbled upon a channel called Alison’s Journey. This led me to other content creators also struggling with thinning hair. Watching how candidly they talked about their hair loss and their practical solutions that allowed them to carry on and rebuild their confidence was incredibly inspirational. I suddenly felt as though I would be able to move forward in a positive way, armed with more information and tools, and longing for connection with others who truly understood what I was going through. This was my turning point! It instilled hope in me that there were options yet to be explored, and planted the seed for me to reclaim my sense of identity despite my thinning hair.
I put out a call on Instagram for others to share their turning points with me. I thought it would be helpful to put together some different experiences with the intention that others might relate and draw different lessons from other hair loss sisters. And boy, they shared some POWERFUL stuff.
Neveen (@neveen.wood) “I think what helped me was talking and meeting folks in the community! Like you!”
@her247hair “For me the turning point was when the pain was bigger than the fear. That is even a quote I think I saw somewhere. You take action once pain is higher than the fear of unknown. I guess finding some communities (back in the day that were forums) with similar people and learning about their solution was something that helped a lot. Also focusing on solution was quite freeing as I felt there was something about this hair loss I had control of. After 3,4 years of doctors and treatments and hoping for world hair loss solution – I just saw that I can hope for something that may never happen and lose the best years of my life over this. I also asked myself what would I remember my 20s for when I am old? Would I want to remember how depressed I was and avoiding social life OR would I find a solution (doesn’t have to be perfect!) and just move on? Living life.”
Whitney (@smallsassystrands) “My turning point was definitely ordering my first topper. It was easy to choose a topper brand based on seeing so many girls in the community. I chose my brand and I looked at all her photos of customers for hours. I’d let girls know when choosing a brand to look at their page and look at all the customers that they have shared photos of. Also since it can be competitive to turn on notifications from their favorite brands. Ordering a topper was so scary but I think most times even if it’s not quite right it’s better than my bio hair so I could either be self conscious in my bio hair or not as quite as self conscious in my topper. Ordering a topper was def my turning point because I knew there was an option that didn’t consist of using half of bottle of fibers, etc.”
Gail (@lets_talk_hairloss) “I think my turning point was when I got my first wig and I had just started a new job and went from disguising my hairloss with headbands and hairpieces to coming in the next day from having long brown hair to a short ash blonde lob…too fast a change to be a just have had a cut & colour and everyone was noticing so I just decided to be open and after that I just realised it doesn’t need to be as hard as I think it does. I just needed to learn to accept it because I can’t control it and that’s what I try to remember when I have a bad day.”
@abscrackers2 “I love seeing all your posts and everyone in the hairloss community on Instagram has helped me so much. I’m a 52 year old mother of 2 and also a foster carer in the UK with my husband. I just wanted to say that I never really did Facebook or anything and when I decided to open an account on Instagram it has really changed my perspective on social media. When I first lost my hair within 2 weeks in 2018 I felt so alone and felt sorry for myself without showing it to my family and friends. I wore hats and scarves for 2 years but everyone around me said I looked good of course even though I never felt it. One day I found @baldmothertucker on Instagram and I have not looked back! It lead me to buying a wig or 2! And then to this amazing community of people like myself going through the same thing! And so it goes on I am so glad I tried Instagram as it really has given me so much more confidence and everyday I am finding and learning so much about other people like you and helping!”
Collette (@superbald) “My turning point was actually sharing my bald head on IG and finding so many other alopecians just like me for daily support. I have more confidence now than before.”
Amanda (@instahairsister) “A little bit about my hair loss/body image story… So, I was 29 when I started to notice my hair thinning. It got really bad after I turned 30. I bought a human hair wig. It looked good for a while, but no one ever taught me how to properly care for it. So it started to get matted and gross after a while and I just had to deal with it because we had such limited funds at the time. My self consciousness about my wig caused me to eat a lot. I was severely depressed. Admittedly, I was suicidal for a while. At the time, the way I looked impacted me so much; and I thought that my family would be better off without me. I started using Instagram more. I hadn’t really used it a lot before and thought I would learn more about it. I was searching hair, and hair related things at the time- and suddenly, by the grace of God, I stumbled upon the account of @kimdubs_ and that’s when I felt the flood gates of the hair loss community open for me!!! I stalked @kimdubs_ followers list and who she followed and I found this amazing hair-sister community! I found love, hope, support- but the most important thing that helped me get over my “hump” is that I finally felt accepted. I finally didn’t feel alone. And don’t get me wrong- I HATE that any other woman has to go through hair loss. But it felt so good knowing I wasn’t alone. A few months ago I started doing yoga, and I’m down to 137 pounds! Finding the hair-sister community hasn’t just changed my confidence- these women have helped build me up over the last 18 months and helped make me into who I am now. Women that have never met me before, they loved me, lifted me, accepted me. I’m so grateful.”
Nat (@nattynoonoo7) “It was 2 years ago after having Alopecia for more than 30 years and I took part in an Alopecia mindfulness study. There was one session where we had to focus on what we struggle with and I went really deep with this! In fact many of us did which I don’t think the mindfulness coach expected! I was crying and a complete mess talking about how my Alopecia felt so heavy and I was sick of it controlling my life. It was a realisation. I felt like I was outside looking in on myself and seeing how I had let my condition control my life! It’s so easy to push down thoughts and not give attention to them but they have to resurface at some point. Through the guided mindfulness questions I had no where to hide only to focus on the feelings and through that I could truly examine how I was feeling which at the time made me feel broken has actually been the catalyst to start putting the pieces back together.”
Jen (@currentlyjen18) “For me, the turning point was the moment I realized it was the wondering that was holding me prisoner. Could they tell? Did they know? Are they staring? Do they have suspicions? Will they say something and embarass me? How will I react? How will they treat me? This had been the constant loop in my head for YEARS and I was exhausted. I knew the solution was simple. If they knew I wore hair, I would be free to be myself without the shackles of wondering. So I told everyone and it felt very powerful because it was my choice on my terms. That was when I started to heal.”
Valerie (@valerinafuentes) “After almost a decade living with alopecia, I had a car accident that left me in the ICU for 4 days and off from work for 3 months. The accident put my priorities into perspective and hair loss was definitely not one of them. I was filled with gratitude to be alive, with or without hair. After the accident, I stopped monoxidil, laser comb and all the things I was using looking for re-growth and chose to start wearing hair. Ever since, I haven’t looked back.”
Thank you to everyone who shared. Community and connection and pretty hair to wear are definitely themes. Everyone’s turning point will be different- but almost always, it should include support, whether virtual or face to face. Inspiration is all around and my hope is that reading these turning points helps you generate ideas about where to find it! It will propel you into a whole new leg of this difficult journey!
If you have a turning point you’d like to share, comment below or connect with me on Instagram @elleshaircorner
Much love and healing,