Replies to This Discussion

Permalink Reply by Lara79 on November 14, 2018 at 9:47am

I would start by saying I understand your response to seeing pictures - I really do. I was diagnosed 2 and a bit years ago and have tried everything and yet my hair keeps going. No one on here wants to be losing their hair otherwise they wouldn’t be on here and the advanced stages are not where any of us want to end up.

I don’t usually post on here but felt very strongly that I needed to say something though. As you will see from some of these posts and presumably on your other group, this condition is devastating for many of us. It has a massive psychological impact and I am aware that many of our peers have started antidepressants just to cope with this disease. 

My first caution would be that many of us are on several support forums. I recognise stories on here from Facebook posts and so if you do post about pictures posted elsewhere the poster may also be on here. I hope for her sake not but worth just bearing in mind.

I haven’t seen her post but I suspect she probably wasn’t bragging but maybe trying to offer optimistic comfort to her fellow sufferers. Recently some very brave women posted pictures of themselves in solidarity. If I’m honest they did scare me a bit as how I may look in the future BUT my overriding thoughts were that they were brave, honest and doing this to help others not feel alone. I do not share their bravery and for most of them it was a really hard step but I was grateful for them. Even if I found their images disgusting, repulsive etc  I would not commit that to writing and especially not for an audience where some of the women may look the same. We all need people to confide in about our fears but choose your audience. This is not the right place to use those words to describe people with advanced disease as some of the readers will relate to the woman you describe. 

Given my point about people starting antidepressants, the words you use may be triggers for a downward spiral as they sum up our worst fears about how others will see us. 

None of us ever want to be described by a stranger as ugly and if you read between the lines of her post, I doubt she is trying to convince people to enjoy hairloss with wounds. She may well be dying inside but trying to put a brave face on it. I’m sure you’re suffering too and this disease can make us depressed, so very angry and filled with sadness. We all need support but also need to just think about our choice of words and who we share them with.

My intention isn’t to be harsh but just  to offer a gentle reminder that you are not alone in your feelings so kindness is key.

Permalink Reply by Halfbakedwho on November 14, 2018 at 11:53am

I second what Lara has said so well. Whoever posted that picture of herself was indeed brave.

Please find yourself some help so that you can grow in your acceptance. Sometimes for me, it's a struggle, but as time goes on (and as I lose more hair) I find myself less troubled than I was initially. Life has to go one. 

Permalink Reply by illustr8r on November 14, 2018 at 7:17pm

I have seen some scary photos of FFA and it's devastating to think that this could be me in a few years. I'm mortified as this disease rips away your self esteem and confidence. I need to get my eyebrows micro bladed again as it takes 4 pencils and powder to make them normal looking and I am so sick of drawing on non existent hairs. I miss my normal self so much and I am jealous of women who are my age and have no idea of the trauma that we see daily when we look in the mirror.

How to cope. I cried and cried early on. I've come to terms with it temporarily as my shedding has slowed. If it would flare again I will be a distraught mess again-no doubt.

Some ladies are certainly more brave sooner than some. I applaud them for that and sharing the potential to "get there" myself if someday I find that I look like Elmer Fudd. Everyone deals with this disease differently-just like the drugs do to treat it. There are no right ways or wrong ways to cope. It's an individual journey. I am relieved that I have this Board to come here to vent.

Otherwise, no one really understands.