Alopecia World
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Hello all. Just a bit of an update
I haven't been on the site for a while, but its good to see so much happening as far as help, support and advice.
I first started losing my hair back in Oct 2011. I was 41 then. I had just been through a marriage break up and having never had hair loss before I have staunchly put it all down to stress. I started with just a small bald patch on my chin. I didn't worry and thought it must be "one of those things" A week or two later my daughter was giving my hair a trim and told me I had numerous, small bald patches on the back of my head. At the time I just thought to myself, "whoah, weird" and made a mental note to go see my doctor sometime. Within a couple of weeks I noticed the patches on my head getting bigger and a few new ones on my face. My doctor told me it was most likely alopecia and that there was no accurate prognosis. It could fix itself, it could all go, It could do anything. I had blood tests that didn't show up anything of concern and got some steroid cream and shampoo. Things moved pretty fast after that. By Christmas I had given up on the cream and shaved the back and sides of my head and lost my beard. By April I had shaved my head completely. At that point I wouldn't say I was distressed or depressed by what was happening. Most people thought I had just decided not to have a beard anymore and to cut my hair off. (Ageing Ex punks do that sort of thing.) A few people told me it was a good look for me. So with a bandanna, the ear rings back in and a pair of shades things were all good... Even the kids thought Dad looked "Rad" (Whatever that means.) Around six months went by before I started to lose my eyebrows and eye lashes. But once they started to go they went fast. I also started to notice a few patches on my chest and legs. Strangely, (or maybe not) It wasn't until I lost the eyebrows that things started to sink in. I never realized just how important to your face they are.. I suddenly looked totally different. Without my hair, I still looked like me.. But without brows and lashes the change was huge.
Straight away I noticed people looking at me in an odd way. You probably all know what I'm talking about. Those half glances, and that slight hesitation on meeting, because they either cant quite figure out out whats wrong with your face, or their wondering what awful disease you might be harboring. I always found it refreshing when people simply asked me if I was ok. Or If I was having treatment for cancer. Kids are great. They just say it as it is. "Why you got no hair???"
For a while I got really down about it. I researched everywhere and spent a lot of time here on the site reading other peoples stories and experiences and realized two things. One, I wasn't on my own. And two, there was simply no knowing how this goes. It seems everybody is different and that there's just no rhyme or reason to this condition.. The one thing that got me out of my downer for good though was a trip out to the cinema with my kids. I hadn't been going out much and was dreading this trip. I had forgotten my hat and felt very self conscious. Surrounded by a crowd of people in the bright lights of a movie foyer I was convinced that everyone was looking at me, that I looked like a freak, that people were worried they might catch whatever I had. At that moment my son asked me for a piggy back and jumped on me, wrapping his arms round my neck. At the same time I realized that both my girls were holding my hands. It clicked for me then. If my kids weren't embarrassed to be seen with me and still saw me for who I was then nothing else matters. After that I forgot about the hat, shades etc and just went commando. If my three kids could get over it. I sure as hell could too.
It wasn't long before the people that knew me got used to it and knew what the problem was. And for the people that didn't know me... Well.. Who cares!!! I have to say that life got a lot easier and more comfortable.
I never went back to my doctor. I couldn't see the point, I stopped looking for answers and cures on the web and managed to just get on with life. I admit that I still despaired when I looked in the mirror each morning. "Lord Voldemort sprang to mind."
Around October last year I noticed that some of the very fine white hairs on my head, that I had been shaving off had started to thicken and get some color. I didn't think much of it and carried on shaving my head as per usual. By Christmas I had around 50% dark hair back on my scalp, A few white hairs on my eyebrows and noticed that the patches on my legs and body had got no bigger. I actually tried not to get excited.. I knew from reading others experiences that the whole lot could go again tomorrow. I even stopped checking the progress.
By March this year I had most of my hair back on my scalp, Around 75% of it with color. My left eyebrow was getting thicker and darker and a few hairs on my right brow were growing. I spent a month in agony as my eyes were itching and watering before realizing that new eye lashes were growing and curling into my eyes.
Right now.. I'm daring to have a little hope that whatever started this process almost two years ago has begun to slow down or reverse itself. In the last few weeks a few people have commented. "Hey.. Look.. Your hairs coming back.." Looking in the mirror now, I could just about pass for a bloke going thin and grey as far as my head goes. My beard is still white, but thicker. (I shave it anyway) and I have One eyebrow that's around 50%. The others still a work in progress at around 15%.
Am I happy??? You bet I am. But lingering behind the joy is the specter that it could all go again. It might. Who can tell?? As I have had no treatment or medication I'm hoping that my body is just curing itself and that by spending the last two years de-stressing my life that I'v managed to stop or reverse the damage done.
Unless you have had alopecia yourself, there is no way of knowing how it can affect a person. There are people out there who have had this condition for years, since childhood, People who have rejoiced at getting their hair back, only to lose it all again.. I'm a 43 year old bloke, and I worried about how I looked.. I cant begin to imagine how it feels to a 16 year old girl. or a youngster in school. It must take unimaginable bravery for those people to face the world each day. I don't think I was brave. I was vain, then in denial, then indifferent, I didn't even have the fight to go back to the doctor. Maybe Iv just got lucky for a while. Who knows? Im certainly not booking a stylist just yet.
Iv never written down whats happened to me before. It feels good.
To everyone out there who has been affected by alopecia, my heartfelt best wishes are with you.
Carl.
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Comment by willow on June 4, 2013 at 6:53am
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Loved your story. It feels so good to read stories of regrowth. Very touching. Kids can be great. I've had alopecia for 40+ yrs, and 8 yrs ago, I finally began going without my wig. My 16yr old daughter...bless her heart, buzzed all her hair off, so I wouldn't be alone. Your story reminds me of this. We are blessed to have such loving children. Thank you for sharing :)
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Comment by MaddiiBoo on June 7, 2013 at 4:30am
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this is one of the most amazing stories I have read to date. Thanks for sharing it with all of us.
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Comment by Carl on June 10, 2013 at 5:48pm
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Thanks Willow and Maddiboo. And your welcome. Willow, I cant even begin to imagine living with alopecia for as long as you have. Its one thing being a bald bloke, but I suspect being a woman makes things a whole lot more distressing. Your daughter obviously has a sharp mind and a big heart.. My experience along with many stories on the site got me wondering about how much of our distress and concern is actually to do with "having our condition" as opposed to worrying what other people think. (As a proportion.) Id have to say on a relative scale that I was more concerned by how I was percieved than I was with having a condition that caused all my hair to fall out in under a year. Probably not a healthy ethos if as in my case I suspect stress was a main factor. Any thoughts??
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It is a struggle, but at some point it hits you that it is irrelevant what people may or may not think of you. I went through a phase where I was worried what people thought of me and I became antisocial and started hiding out in my room for almost a year. But now after a lot of thinking and a lot of help from this very site, I have realized what people think of me does not change anything. I have only ever gone out bald once, but I have been bald around family and friends since day one. No one was even phased by my hair or lack thereof. We tend to be harder on ourselves than others. At times it's easier for us women because we can wear wigs and use makeup to aid us. I hope you recover and stay recovered.
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Comment by Chad on June 15, 2013 at 12:54pm
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Thank you for sharing your story. It helps me out in more ways than one. I'm still trying to be confident once again. I'm single and 26, so it's a little different seeming how woman look at me now. Now they just think I have a disease(woman natural look for disease free men, subconsciously.) how do I get to your position. Thank you
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Hi Chad. Im sorry I havnt replied up until now. Thanks for adding to the blog. Im sorry that your going through what I know is a stressful and disheartening time. I was at your stage about 12 to 18 months ago. I can perfectly understand your feelings about how people look at you. It maybe wasnt as bad for me as Im in my forties, but I used to love flashing a smile at an atractive woman and getting one back. Yes, us fellas need our ego stroking now and again and thats only natural. But I know the feeling when women start to look at you differently. Maddiboo made a comment (see above) that we tend to be harder on ourselves than others are, I think shes right. What we see in the mirror terrifies us because we know what we should be seeing. Just remember that new people we meet dont know what we looked like last week or last year. To them its just Chad or Carl.. I also think that how we act has a lot to do with it. If we sit shyly in a corner trying to avoid attention Its far more likely that someone would think "Hey, theres something wrong with that dude." Whereas if we bite the bullet and act with confidance (I know its not easy) People tend to think "This guy must be ok if hes mixing it up and getting involved. Its all about remembering who you really are and not just what you look like. I didnt learn that lesson for a long time and it took my kids to teach it to me.
I was lucky that I was settled with a partner, 3 kids etc. They were very supportive and already knew that I was a decent bloke. that I didnt have a contagious disease and that my alopecia was just an unfortunate, random thing.
I can see that you are still at the stage where your young and want to be out there mixing it up. It must be hard.
My head looked the same yours in your photo, although I had a pretty accurate rendition of northern europe on mine.(including Greenland.) I think that stage was bad because I wasnt totally bald and it was obvious to anyone that there was something wrong. I ended up shaving so it looked more natural. I just used the same razor as i used for my face. It looked a bit weird at first as my scalp hadnt seen the light of day since I was a baby. It was a sort of blue colour and the patches really stood out. I got told to get a tan on it as soon as possible. I live in New Zealand so that wasnt a problem and as soon as my scalp started to colour up it looked a lot better. Before it got looking better I wore a bandana (especially at work) so as not to get to much sun on it. If I went out at night I tended to wear a fedora or trilby.
It was kind of a relief when I was completely bald. For me it was losing my eyebrows that distressed me the most. That changed my face completely and put me at my lowest point. But life went on and I lived with it..
Im not sure how to answer your question on "getting to my position" It seems everybodys alopecia has a different progress route. We just dont know how far, or for how long we are going to be affected. I must admit that I just put my head in the sand and hoped it would go away. I went to see my doctor once and could tell by his expression that what he was suggesting was just lip service so I havnt had any medication. Right now I just consider myself lucky that things are growing back. I havnt been pro-active in it as far as I know, other than making sure I keep de-stressed.
Im sure a healthy diet and keeping fit helps the body to heal itself so your doing the right thing there. Was there a significant event that you think may have started your alopecia?? Im absolutely convinced mine was brought about through stress, so Iv worked on staying stress free, keeping fit and eating well. Have you had any medication or help??
Please Chad, Stick with it. I know its hard, but dont let it beat you. You are who you are with or without hair. Write me back and let me know how things are. Just keep fighting...Carl.
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