Having systematically worked through the different severities of Alopecia Areata as if it were a Nintendo game ripe for completion, I wanted to explore how I have found living with each severity of Alopecia Areata and the differing impacts they have had on me.
Firstly, I would like to make clear that I believe any form of hair loss, regardless of severity, can be difficult to deal with. I don’t think that you have to lose ALL of your hair to be deemed worthy of struggling with Alopecia Areata. As I will describe, I have found that each severity has its own unique set of challenges.
Patchy or Ophiasis pattern Alopecia – you are up first!
As the name suggests, patchy Alopecia Areata consists of varying numbers and sizes of typically circular or oval hair loss. Patches can join together and form more extensive areas of hair loss.
Ophiasis pattern is a specific type of Alopecia Areata where hair loss is focussed around the ears and the area above the nape of the neck. My Alopecia Areata has always seemed to have a predisposition to Ophiasis pattern. Even now, behind my ears and temples are the most stubborn areas to grow back and the first to fall out.
My Alopecia Areata began as the patchy version when I was 10 years old. It started off with bald spots the size of 10 pence pieces. From the age of 10 up until around my mid-twenties, I had ongoing rotating patches of hair loss over my whole head which would vary in size and number. During this phase of my Alopecia Areata, the thing that was most difficult for me was becoming fixated and obsessed with these patches.
Had that patch got bigger?
Were those patches going to join up?
Was that a new patch?
Was I going to be able to cover this one up?
There was also the tendency to become obsessed with the amount of hair coming out in the brush and the amount of hair coming out in the shower. I would actively avoid brushing and washing my hair as if this was a mastermind solution to the whole thing that nobody else had thought of.
I became adept at covering patches. I had thick, curly hair which meant that, in the early phases, these patches could be covered relatively easily with a change in hairstyle, hair accessories such as headbands, or hair extensions. I built up a plethora of hair accessories consisting of every type of headband and head scarf known to man. On one occasion, my mum and sister helped to sew some hair extensions on to a soft black head band and this was an absolute gamechanger for a while as it simultaneously covered up patches behind the ears and on top of my head.
Unfortunately, in the stages where my hair loss started to get persistently and progressively worse, trying to hide patches became a constant battle. I would find a fix that would work for a couple of weeks and then another patch would appear, or a patch would get bigger, and that fix was no longer viable.
I have heard some people who have Alopecia Areata describing the relief when all of their hair has fallen out. And I can completely get on board with that sentiment. One of several periods that my Alopecia Areata was particularly all-consuming was in the limbo stage between the bad patchy Alopecia Areata and the Alopecia Totalis (complete loss of hair on the scalp). I felt on constant high-alert and exceptionally anxious about what was to come. I knew that there were many significant steps that were inevitably approaching such as having to think about buying my first wig, considering getting my head shaved, and what ultimately felt like having to accept defeat.
I think that when you are faced with deeply difficult situations your brain automatically strives to find any positive that it can cling onto. For me, in this vein the mantra that I seemed to develop was “at least now that your hair is gone, it’s gone”. And there was the tiniest slither of comfort in the depths of that darkness in knowing that, at the very least, I did not have to obsess and ruminate about patches anymore. It gave me an iota of control that I could cling onto amidst a gargantuan feeling of helplessness.
For context, it is thought that approximately 2% of the population will have any type of Alopecia Areata. In contrast, it is thought that approximately 0.03% of the population will have Alopecia Universalis (complete loss of hair on the scalp and entire body). Some people who develop Alopecia Areata, will have spontaneous regrowth within the first year, and some will continue with the patchy hair loss. This means that for many people, the Alopecia Areata will not necessarily worsen. For myself, I was in the unicorn territory of having disease that would progress.
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