Alopecia World
www.alopeciaworld.com
Trying to cope
Well I have tried to avoid being open about my disease because I am so ashamed of it. But then I decided today to do a google search for alopecia and stumbled across this website and decided to join. I can't find a pyschiatrist that is seeing new patients so I guess this will have to do for now because I am going insane. I think I just need to write and get all the horrible things spinning through my head out "on paper".
I first discovered what my dermatologist at the time called "a patch" in junior year of high school. I was 17 and in a very intense academic program called International Baccaleureate (IB for short). I was being pressured by my parents to be active in sports (track and cross country), marching band, German club, and numerous other clubs and honor societies. I guess the stress wore me down because one day I was inspecting my ponytail in the mirror and discovered a dime-sized bald spot. It totally freaked me out. I thought maybe I just brushed my hair too hard or something, but mom insisted we see the derm. He said it's probably nothing, just a patch from stress, and sent me on my merry way. The patch grew in and for the next six years of my life I never thought about it again. I had long, beautiful, straight blond hair (natural) that anyone would kill for. I had long dark eyelashes and perfectly arched light brown eyebrows. I was always very self conscious with my weight and other things but my hair was the one thing I thought God decided to give me that was beautiful.
I moved to a suburb of DC in December 2007, shortly after graduated from college at Virginia Tech with a degree in accounting. It had been a crazy awful year, with the April 16th shooting (I lost a sorority sister and a fellow Resident Advisor to the tragedy), then contracting strep following by mono in the summer, and deciding to transfer my full time offer with a prestigious Big Four accounting firm from Richmond to DC (my serious boyfriend of 5 years was living in DC and I decided to move up here for him). My first two weeks at the job were the first 2 weeks of January, right after new year's. I was in training in Week Two when I noticed my hair line, where my bangs were, was really greasy one day. I re-washed my hair and dried it but it still looked odd. I decided to put a headband in and figure it out later. Well by the end of the week I noticed that my hair looked thinner around my hair line. I didn't understand what was happening but because nothing more happened--i.e. it jsut got thin around my hairline--I ignored it. By the summer the hair had grown back and I got it cut shorter to match the shorter pieces growing in (FYI my hair grows infinitely, ridiculously, slow). I thought my issue was over but by Thanksgiving 2008, things had taken a turn for the worse.
My girl friends and I decided to go out one night and one of them was styling my hair when she took me to th ebathroom and said "I dont want to say anything in front of everyone but, it seems like you have some places where your hair is not there". I simply nodded, had her hide the spots with big curls, and we went out and I tried to have a good time anyway. But I was worried.
By Christmas, it was getting to be that I would shower and clumps were coming out. I had to buy Drano multiple times to unclog my drain. I cried the entire time I was pouring the shit down my tub drain. I cried when I would pull clumps of hair out of my hairbrush. I'm crying as I write this--it's ridiculous.
My boyfriend was seriously concerned, and he begged me to see a dermatologist. I finally took the step and made an appointment during Christmas week. She told me she would refer me to this university hospital center in DC who had a great treatment program for alopecia -- something about light technology would grow my hair back...who knows. So I trekked out to a terrible part of town to go to this shady hospital and the guy ended up just referring me back to my normal derm. He said to try rogaine. And if that didn't help, to come back. Seriously? What a waste of time. I mean by now I had lost about 50% of the hair on my head. So I went back to my derm (this was about 2 years ago to put it into perspective). She prescribed oral prednizone, Olux foam, and said eventually we could do injections of a steroid called Kenalog. I also started taking a multivitamin and Biotin supplements. I also went to my family doctor to get tested for thyroid disease or anemia (both came back negative).
I spent New Years in NYC with my boyfriend and his friend. I had to wipe out her tub after I showered. It was full of my hair. By now, 75% was gone, I had no eyelashes, no eyebrows, and no hair on my entire body--arms, legs, everything was bald...
By the time we got back to DC I knew I needed a wig. I was so completely embarassed and ashamed. My job wouldnt allow me to wear a hat or scarf. I told as few of my coworkers as possible about my disease because I was so embarassed, so then when I came to work with my "new hair"...it was awful. I got questioned by everyone and they all were like di dyou get extensions? And I didn't feel like taling about being bald so I just let them assume.
Well I started on the injections once the prednizone started working and I had peach fuzz everywhere. The timeline gets really fuzzy but it was about 5-6 months or so. That summer I went to the beach with family and there are pictures of me with my supershort hair. So by Christmas 2009 it was to the point where it just looked like I had a nice pixie cut. My hair was growing back everywhere except one stubborn patch at the nape of my neck--who cares? 95% of my hair was back 1 year later. I thanked God and was so grateful. I was using Latisse to grow my lashes and eyebrows (insurance doesnt cover this, of course, pretty much everything associated with this disease is "costmetic" including the high cost of wigs). I was wearing little clips and headbands and mascara and felt great. I went back to work in January 2010 without my wig and shocked everyone with my "new short haircut"--I let that one run wild too, I was too emotionally drained to correct anyone.
Over the next 6 months my hair kept growing! I was so excited and happy. I even threw my very ratty synthetic wig in the trash as a celebration (it is un-wearable anyway). Then in August I noticed a new patch and my lashes falling out again (even though I was still paying $120 every 2 months for Latisse and using it religiously). By late September the hairline under and around my right ear was bald again. It is November and I would say I still have about 85% of my hair, maybe even 90% but thin almost nonexistent lashes and only my left eyebrow is full. I look like a clown unless I apply makeup very carefully.
So the status update is, I am still on prednizone 2 years later, and still getting injections in my scalp--that can't be good for me right? But every time I taper off my hair gets thin again...the price we pay for beauty huh? It's not only that, its my confidence, my self esteem. I feel like with each strand I find in th ebrush, on my hand, in the drain, on the floor, on my tshirts, I lose a part of my happiness. I just want to go back to feeling normal.
I am getting married to the boy I moved to DC for--in June 2011. I just want to have my real hair on my wedding day. I can't fathom the devastation that I would feel if I had to wear a wig on the most important day of my life.
Is it silly of me? Is it shallow? My friends don't understand what I go through. I am obsessed with thoughts of my hair loss. I stand in front of my mirror for 20 minutes every night just inspecting my scalp. I have spent thousands by now on doctor visits, prescriptions, injections, creams, special shampoo (Nioxin, it doesnt work), a wig, and if I can ever get an appointment, seeing a therapist. Which will probabyl come with its own set of drugs.
I can't watch tv, read a magainze, hang out with my friends, without somehow thinking about my hair loss. I watch them doing their hair, complaining about their hair, talking about haircuts, applying mascara--the littlest things in life that I can't enjoy anymore. It has completely consumed me. I am also sick all the time because of essentially destroying my immune system with the prednizone. I have missed a lot of work because of this disease. But in the end I think maybe a cause of the disease is stress--most definitely related to my line of work. It feels like I am trapped in a catch-22 because I know my alopecia flares up with periods of high stress in my life, even if I can't ever know the true cause of the disease, but hair loss stresses me out and then I just end up losing more.
I just feel very ALONE. I have never seen anyone else with alopecia, I have never talked to anyone else. I feel like no one understand what I have gone through. I am terrified of dealing with this for the rest of my life and because it doesn't mean I am sick, no research will ever go into finding a cure--or even a cause--to this disease.
I am depressed, obsessed, anxious, and I have lost interest in things that I used to love, and people who used to make me happy. I am grateful my fiance has stood by my side through everything but he takes it very scientifically--Erin, are you losing your hair again? Ok, you know what to do. Go to the doc, increase your prednizone...but I just want someone to talk to who knows what I am going through.
I feel also like I am a petty person because this disease doesn't mean I am sick, I mean there are peopl elosing their hair because of cancer...I feel I don't have the right to complain about how unfair this is, how unfair life is, because people are battling far worse things. But in those things comes a lot more avenues of support..both mentally and financially. It is a really annoying thing to me to have to say "Well I have alopecia"and have to explain everything because no one knows what it is...it's not fun having a rare disease. Lucky us right?
I first discovered what my dermatologist at the time called "a patch" in junior year of high school. I was 17 and in a very intense academic program called International Baccaleureate (IB for short). I was being pressured by my parents to be active in sports (track and cross country), marching band, German club, and numerous other clubs and honor societies. I guess the stress wore me down because one day I was inspecting my ponytail in the mirror and discovered a dime-sized bald spot. It totally freaked me out. I thought maybe I just brushed my hair too hard or something, but mom insisted we see the derm. He said it's probably nothing, just a patch from stress, and sent me on my merry way. The patch grew in and for the next six years of my life I never thought about it again. I had long, beautiful, straight blond hair (natural) that anyone would kill for. I had long dark eyelashes and perfectly arched light brown eyebrows. I was always very self conscious with my weight and other things but my hair was the one thing I thought God decided to give me that was beautiful.
I moved to a suburb of DC in December 2007, shortly after graduated from college at Virginia Tech with a degree in accounting. It had been a crazy awful year, with the April 16th shooting (I lost a sorority sister and a fellow Resident Advisor to the tragedy), then contracting strep following by mono in the summer, and deciding to transfer my full time offer with a prestigious Big Four accounting firm from Richmond to DC (my serious boyfriend of 5 years was living in DC and I decided to move up here for him). My first two weeks at the job were the first 2 weeks of January, right after new year's. I was in training in Week Two when I noticed my hair line, where my bangs were, was really greasy one day. I re-washed my hair and dried it but it still looked odd. I decided to put a headband in and figure it out later. Well by the end of the week I noticed that my hair looked thinner around my hair line. I didn't understand what was happening but because nothing more happened--i.e. it jsut got thin around my hairline--I ignored it. By the summer the hair had grown back and I got it cut shorter to match the shorter pieces growing in (FYI my hair grows infinitely, ridiculously, slow). I thought my issue was over but by Thanksgiving 2008, things had taken a turn for the worse.
My girl friends and I decided to go out one night and one of them was styling my hair when she took me to th ebathroom and said "I dont want to say anything in front of everyone but, it seems like you have some places where your hair is not there". I simply nodded, had her hide the spots with big curls, and we went out and I tried to have a good time anyway. But I was worried.
By Christmas, it was getting to be that I would shower and clumps were coming out. I had to buy Drano multiple times to unclog my drain. I cried the entire time I was pouring the shit down my tub drain. I cried when I would pull clumps of hair out of my hairbrush. I'm crying as I write this--it's ridiculous.
My boyfriend was seriously concerned, and he begged me to see a dermatologist. I finally took the step and made an appointment during Christmas week. She told me she would refer me to this university hospital center in DC who had a great treatment program for alopecia -- something about light technology would grow my hair back...who knows. So I trekked out to a terrible part of town to go to this shady hospital and the guy ended up just referring me back to my normal derm. He said to try rogaine. And if that didn't help, to come back. Seriously? What a waste of time. I mean by now I had lost about 50% of the hair on my head. So I went back to my derm (this was about 2 years ago to put it into perspective). She prescribed oral prednizone, Olux foam, and said eventually we could do injections of a steroid called Kenalog. I also started taking a multivitamin and Biotin supplements. I also went to my family doctor to get tested for thyroid disease or anemia (both came back negative).
I spent New Years in NYC with my boyfriend and his friend. I had to wipe out her tub after I showered. It was full of my hair. By now, 75% was gone, I had no eyelashes, no eyebrows, and no hair on my entire body--arms, legs, everything was bald...
By the time we got back to DC I knew I needed a wig. I was so completely embarassed and ashamed. My job wouldnt allow me to wear a hat or scarf. I told as few of my coworkers as possible about my disease because I was so embarassed, so then when I came to work with my "new hair"...it was awful. I got questioned by everyone and they all were like di dyou get extensions? And I didn't feel like taling about being bald so I just let them assume.
Well I started on the injections once the prednizone started working and I had peach fuzz everywhere. The timeline gets really fuzzy but it was about 5-6 months or so. That summer I went to the beach with family and there are pictures of me with my supershort hair. So by Christmas 2009 it was to the point where it just looked like I had a nice pixie cut. My hair was growing back everywhere except one stubborn patch at the nape of my neck--who cares? 95% of my hair was back 1 year later. I thanked God and was so grateful. I was using Latisse to grow my lashes and eyebrows (insurance doesnt cover this, of course, pretty much everything associated with this disease is "costmetic" including the high cost of wigs). I was wearing little clips and headbands and mascara and felt great. I went back to work in January 2010 without my wig and shocked everyone with my "new short haircut"--I let that one run wild too, I was too emotionally drained to correct anyone.
Over the next 6 months my hair kept growing! I was so excited and happy. I even threw my very ratty synthetic wig in the trash as a celebration (it is un-wearable anyway). Then in August I noticed a new patch and my lashes falling out again (even though I was still paying $120 every 2 months for Latisse and using it religiously). By late September the hairline under and around my right ear was bald again. It is November and I would say I still have about 85% of my hair, maybe even 90% but thin almost nonexistent lashes and only my left eyebrow is full. I look like a clown unless I apply makeup very carefully.
So the status update is, I am still on prednizone 2 years later, and still getting injections in my scalp--that can't be good for me right? But every time I taper off my hair gets thin again...the price we pay for beauty huh? It's not only that, its my confidence, my self esteem. I feel like with each strand I find in th ebrush, on my hand, in the drain, on the floor, on my tshirts, I lose a part of my happiness. I just want to go back to feeling normal.
I am getting married to the boy I moved to DC for--in June 2011. I just want to have my real hair on my wedding day. I can't fathom the devastation that I would feel if I had to wear a wig on the most important day of my life.
Is it silly of me? Is it shallow? My friends don't understand what I go through. I am obsessed with thoughts of my hair loss. I stand in front of my mirror for 20 minutes every night just inspecting my scalp. I have spent thousands by now on doctor visits, prescriptions, injections, creams, special shampoo (Nioxin, it doesnt work), a wig, and if I can ever get an appointment, seeing a therapist. Which will probabyl come with its own set of drugs.
I can't watch tv, read a magainze, hang out with my friends, without somehow thinking about my hair loss. I watch them doing their hair, complaining about their hair, talking about haircuts, applying mascara--the littlest things in life that I can't enjoy anymore. It has completely consumed me. I am also sick all the time because of essentially destroying my immune system with the prednizone. I have missed a lot of work because of this disease. But in the end I think maybe a cause of the disease is stress--most definitely related to my line of work. It feels like I am trapped in a catch-22 because I know my alopecia flares up with periods of high stress in my life, even if I can't ever know the true cause of the disease, but hair loss stresses me out and then I just end up losing more.
I just feel very ALONE. I have never seen anyone else with alopecia, I have never talked to anyone else. I feel like no one understand what I have gone through. I am terrified of dealing with this for the rest of my life and because it doesn't mean I am sick, no research will ever go into finding a cure--or even a cause--to this disease.
I am depressed, obsessed, anxious, and I have lost interest in things that I used to love, and people who used to make me happy. I am grateful my fiance has stood by my side through everything but he takes it very scientifically--Erin, are you losing your hair again? Ok, you know what to do. Go to the doc, increase your prednizone...but I just want someone to talk to who knows what I am going through.
I feel also like I am a petty person because this disease doesn't mean I am sick, I mean there are peopl elosing their hair because of cancer...I feel I don't have the right to complain about how unfair this is, how unfair life is, because people are battling far worse things. But in those things comes a lot more avenues of support..both mentally and financially. It is a really annoying thing to me to have to say "Well I have alopecia"and have to explain everything because no one knows what it is...it's not fun having a rare disease. Lucky us right?
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Comment by Erin on November 18, 2010 at 4:34pm
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thanks Paul, I really appreciate it.
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Comment by Trish on November 18, 2010 at 6:34pm
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Hi Erin, just like Paul said there is no need to be ashamed, although I know what you are feeling and going through..I am fairly new to this AA myself and I am on an emotional roller coaster that will not allow me to get off..I feel for you hun and we are here for you.. Not sure if you have read my blogs, but I am in the same frame of mind as you are right now and it is the most horrible thing ever..I am trying to hang in there and hope that you do the same..Here for you whenever you need to talk...:) Big hugs
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Comment by JeffreySF on November 18, 2010 at 7:58pm
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Hi Erin,
Sorry to hear you are down. I know how you are feeling.
You've takin a big step by joining Alopecia World and talking it out. Get to know some people here who are going through the same thing you are. My next sugestion would be to meet others in person. Hopefully you have a local support group in your area. You can look at www.naaf.org
Jeffrey
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Comment by clare majka on November 18, 2010 at 11:22pm
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hi Erin my name is clare and i am brand new to this website first i am so sorry that you are going through this terrible roller coaster ride but guess what i am sitting beside you.I know what it feels like to see your hair wash down the drain every day, no one will ever know how you feel unless they are going through the same thing.I Have AA and its very aggressive i would say i have lost 75% of my hair in the last 5 months its overwhelming its the hardest thing i have ever encountered in my life. I AM 46 years old have 2 beautiful girls and am married. My husband is supportive but he can't take away my pain no one can, people say it will take time and i will adjust right now i can't see that far ahead one day at a time right ? I WISH YOU WELL Erin hope to become your friend clare.
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Comment by Diana Carter on November 18, 2010 at 11:57pm
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I feel your pain & frustration! I was diagnosed with AA October 4th this year... Seems everywhere I go, noone has it. I had never heard of Alopecia when I was told I had it. No idea that my insurance wasn't gonna cover my injections...oh, and DITTO...they were considered "cosmetic surgery"..but guess what? ACNE treatments are NOT! Yep! That's what they told me. I have even cried to these ignorant ppl over this injustice. I decided not to continue treatments. The insurance was just the final straw for me. I was more depressed, and so upset having to deal with the insurance part of it...I decided I can't go through that again. Not to mention bawling to these ppl, as if they would EVER care!! I just wished their hair to fall out, and they said, "Thank you" and that was that. Hang in there, and know that you definitely have found a great place of support here!!
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Comment by Piebald on November 19, 2010 at 8:55pm
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Hi Erin. So sorry to hear that you have experienced this too. I am a 44 year old wife and mum and I have AA too. I am also a teacher, which is a very stressful career. My AA only started this year after a particularly bad year group of kids, including an autistic child who is very, very difficult to deal with. I do know how you feel. The clumps of loose hairs everywhere you look, the bald patches that get progressively harder to hide and the regrowth that brings hope but then the sick feeling when another patch starts up somewhere else. I think many of us here on AW can relate to all that. We can also relate to your feelings of guilt that you don't have a terrible terminal illness and the reaction of others when they learn that your hairloss is 'only' AA! I have had people say to me "my dad went bald and he's just fine with it",(yeah, well I'm not a middle aged man, in case you hadn't noticed) or "are you sure it's caused by stress? I heard somewhere that it is caused by....(fill in the blank)" which only serves to make you feel like a fraud. Everyone is an expert until it happens to them and all we can do is accept that they don't mean any harm and try to make the best of the situation. There are some pretty headscarves and clips available nowadays and current fashion trends have thankfully gravitated towards headbands with large silk flowers and interesting bandanas, which does help a bit. Also try to make the most of your other features and buy pretty clothes/perfume/accessories/nails to make you feel better about your appearance. If you are a person of faith you can take comfort in the knowledge that even if God doesn't take this away from you, He will walk through it with you so you won't feel so scared. Also, at the end of the day we have already lost our hair, let's make a decision not to lose our happiness and quality of life and our friends and our dreams for the future too. It is very, very hard to do when we feel so scared and sad but I am trying my best to resolve that my lack of hair will not come between me and a happy life otherwise it will all have been such a waste and I will have suffered double. And there's always hope that the follicles will reactivate one day and all this will just be a distant memory. God Bless. Piebald
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Comment by Pat on November 20, 2010 at 3:32am
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Hi Erin, this disease can initially rob us of our identity and keep on doing it if we let it. It took me a long time to work that one out and coming to terms with alopecia can often take a long time while for others not so long. I have hated this disease and the way I look without hair. I felt robbed, cheated by this disease that caused me to look so different from everyone else. I choose to wear wigs. They are not ideal, no wig is ever going to look or feel like your own hair, but some come pretty close. Alopecia is so unpredictable! It comes, it goes, it partly comes, it partly goes, there's no rhyme or reason to it so I decided in the end to just go with it, fighting it just wore me out and kept my focus on what I saw as the loss of my 'normal' life. It takes a while to realise you can live a normal life with alopecia, you just have to make room for it and adjust yourself around it. It's not life-threatening but definately life altering. Having a place like alopecia world to go to and vent our frustrations is kind of cathartic too. We're all coping the best we can with our good days and our bad days. But the good days do get more and the bad less. This I know.
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Comment by Chentil Changing on November 20, 2010 at 12:10pm
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Erin I really understand where you are coming from. Being recently diagnosed with alopecia universalis was a major shock to me. I have had long hair all my life and come from a family where your hair is your beauty. When my hair started falling out I was devastated. It was falling out in clumps, clogging the drain and filling up my garbage and I became more and more depressed. It took only about 4mos for it to all fall out. It feels like I am in a "prison" in some sense because only a few people know my mom, my cousin, and my boyfriend who thankfully has stuck by me. I am starting to gain some self confidence back but I still feel so ugly sometimes and like you I feel petty about it because other people are very sick but this is a disease too. I have been getting the injections for about 4mos and am starting to get small patches and peach fuzz back so I guess there is hope out there that it might grow back. Although I wear wigs daily I would sometimes like to go without them I just don't know how. I never lost my eyebrows which my dermatologist thinks is odd but I have lost hair everywhere else. Now my eyelashes are growing like crazy but not my scalp hair. I hope and pray everyday that I will get my hair back even though it might sound superficial but I live in a state where its not that convienient to wear wigs all the time like at the beach, on jet skis, etc. Thank you for your story because it is almost identical to what I went and am still goin through and it helps to know someone out there feels like I do. Just try and stay positive your hair is coming back and you have someone that loves you and is stayiny by you despite the fact and you still look beautiful!
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Comment by Julie Koch on November 20, 2010 at 4:48pm
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Hey darling! There is ABSOLUTELY nothing to be ashamed of! I too blamed myself for this happening to me and to be honest still go through bouts of feeling ashamed. I was always daddys pretty little girl and now I don't feel so pretty. I used to get comments all the time about how thick, long and healthy my hair was. Since this hair loss started 10 months ago, not one comment. There are days when I feel SOOO ugly and days when I wake up and say "oh well".... It does get easier with time but we all have those days of crying and unanswered questions of "why me"... I know you will find the support you need on this site. It is full of caring, amazing and BEAUTIFUL men, women and children that are going through hair loss as well as some other issues. I have also battled eating disorders for 18 years and have found great support from others who have suffered from this. It's a wonderful site... Hang in there and it sounds like you have a great man in your life that loves YOU not your hair... Hugs to you! I will request you as a friend as well!
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Comment by Artemis88 on November 20, 2010 at 9:15pm
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I can relate to you more than you EVER will know.
I couldn't even say the word wig for a long time.
My hair also started growing back, I had short curly hair, long enough even that my wigs wouldn't stay on right anymore.
Then school started in Sept and late aug and it started falling out again.
I don't know if it is something with that time of year or what.
I let people assume that when I got a wavy wig, the other one was just me straightening my hair. I understand how you feel, just tired of dealing with it all, and it is cyclical. Stress causes it, then you can't stop thinking about it and it stresses you out even more. I try not to look in mirrors, to distract myself. I once had a friend call me up to cry about a bad haircut, I don't talk to her anymore. It is nice to go places where people don't know me, that way it doesn't matter that I am wearing a wig. I haven't ever let anyone see my head, not even my parents. Only my dermatologist. I am trying to get better but it is taking a lot. I guess all that talking about me really to say I feel you, completely! I am still trying to calm myself, get more sleep, not stress my body out. It isn't fair, but I am trying to deal with it.
It is not vain do you to want your own hair on your wedding day. Don't feel bad about wanting it, but maybe be careful just in case if need some clips or additions. It will still be you, because on your wedding day your soul will shine through. What makes a bride beautiful is what she is feeling and how happy she is, not what is on her. Those are just small accessories. Everyone will be seeing inside of you, and for that, alopecia doesn't stand a chance.
You will have a husband who will love and support you no matter, what and at the end of the day, that is so precious. Congrats on your upcoming wedding I am sure you will look fantastic!
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