After 24 years of alopecia I can say with some confidence that I've experienced every emotion under the sun when it comes to losing my hair.
These were all emotions that I expected to feel along the way. Common sense told me (even at the age of 12) that I would have bad days, awful days and down right hideous days!
It was so easy to become lost in the hideous days but you shouldn't under estimate how strong you are.
We come out of them eventually right?
I know this and I know you get where I'm coming from ....
What I Didn't Expect
I didn't expect to be left feeling so UN-supported by my Doctor!
My GP gave us a simple response of "You've got alopecia" and that was it.
There was no "You've got alopecia so here, let me get you some details on the condition" or "You've got alopecia so here you go, I'm going to print you off a list of support groups in you're area"
Oh there was none of that!
Just a very cold and matter of fact "You've got alopecia".
Now, I'm aware that all this happened for me 20 years ago and that these days the doctors MAY be offering more support but if this is the case then why is it that almost every other 'alopecian' I speak with (and I speak with loads with the work I do) they all have the same thing to tell me.
I'm not even going to write anymore about it in this post as, to be honest, it leaves me feeling a bit cross and I choose to be more of a unicorns and rainbows person these days ...
So - lets get down to the 5 things the doctors don't tell you about alopecia!
1: Alopecia Isn't all in your head
I don't mean this in a flippant way. What I mean is that alopecia doesn't just effect the hair on your head! I was horrified to discover that my eyebrows and eyelashes were falling out along with the hair on my head.
2: Nose hair is actually pretty important
Yep - you guessed it! Alopecia does not discriminate between the hair on your head and the hair anywhere else on your body. Nose hair (as gross as you may believe them to be) are actually very useful to have.
Of course this is not something you'd ever dream to think about unless you actually go to lose them due to alopecia. Que all manner of dust, grease and grime finding it's way into your nostrils and pitching up tent. Before you know it you've developed a twice daily routine of nose picking.
It's needed, I assure you ...
3: The nights can get pretty cold
It's said that we lose around 80% of our body heat through the tops of our head. I don't know how true this is but let me pre-warn you that some nights, it certainly feels to be true. The doctors never tell you that winter nights can be brutal. I can be found EVERY night in a snuggly hat and fleece socks (sexy right!?)
4: If you're lucky you will get some re-growth hurrah! BUT it more than likely wont be where you want it.
What's the deal with bloody big toe hair anyway???? I don't need it. I certainly don't want it and i consider my rapidly growing big toe hair an extremely cruel (and often embarrassing) twist of fate!
5: There is help and support out there.
OK so perhaps the odd doctor will actually be very re-assuring and tell you that there is support available for you. This is not, after all, a blog about slagging every GP under the sun off. But most GP'S won't actually know WHERE the support is.
To anyone reading this I hope that you can take this post in the way in was intended. Light hearted yet honest. I would never underplay the absolutely devastating effects this disease can have on an emotional level for any sufferer.
Remember, I'm one of them :)
Can you add to the above list? What other things do our Doctors fail to tell us at diagnosis?
I'd love to hear your comments below