New to Website, But Not To Hair Loss – Joanne’s Story

by admin on October 19, 2012

I received this email from an amazing gal named Joanne, and I asked her if I could post it for all of you. I have always felt that it is so healing and helpful to hear the words of another going through the same thing we all have been going through. To relate, to understand, to learn… anyway you slice it or dice, sharing is healing. 

Here is Joanne’s Email 

I’ve stepped into a little bit of heaven finding you and this website. I commented to you on Facebook, that you are an amazing and beautiful woman and I wished you lived next door to me! Ha, ha. Yeah, how nice it would be to commiserate and get a Starbucks with someone who understands. It’s so easy to feel isolated with this hair loss crappy lot in life, but your website has opened a door for all of us closet sufferers. I thank you for that, from my heart, along with all the rest of the women on your blog.

Ok, here’s my story: I once had pretty, silky, blonde hilited hair. I once felt pretty. I once liked being in pictures with my two blonde sisters. Then, After being diagnosed with autoimmune disease – I noticed my hair shedding beginning. The drain in the shower, the drain in the sink while blow-drying, my hairbrush… What the heck was happening? I talked to every medical person I could find, a Rheumatologist, a Naturopath, my regular MD, a Dermatologist, my Hairdresser, anyone who might know the answer. I wanted someone to save my hair for me. PLEASE! I so desperately wanted a “diagnosis” that could be corrected by just taking something or doing something. My thyroid levels were normal, my blood work, normal, except for my abnormal ANA, but I was told that alone, shouldn’t be the cause. Biopsy of my scalp, normal. Everyone had an idea, of what to try, but none of them worked.

No matter, my hair kept shedding. I tried every holistic and dietary thing I could that held out even a vague promise. Some periods of shedding seemed to slow but then others were worse. It seemed there was no going back.. my hair would never rebound.
It was excruciating to see myself in the mirror and even more so to see myself next to my two sisters with their beautiful thick blonde hair. I felt like the ugly duckling sister and never wanted to take family pictures after that. Sometimes, my family would tell me I was being “silly”, oh really? Let’s switch heads for the picture then. I was told I was “still” pretty, get in the picture. I often thought, if they were me, they would NOT want to have their picture taken next to two thick blonde heads! Easy for them to say! My husband would tell me I was “pretty” too. My hair was “pretty”, I shouldn’t worry so much. They were all trying to be nice, trying to make me feel better, but they didn’t know how this was consuming me, ruining my life, making me refuse parties, events, anything where I couldn’t somehow hide my hair.

I tried extensions. Wow, big mistake, they just took more of what little I had. Now came my first big challenge. I had a family wedding I couldn’t get out of. I was driven to despair. I told my husband I could NOT go. He was NOT happy. It was his family and for me to say I couldn’t attend because I no longer have any way to “hide”, was an excuse he could not relate to. I looked OK to him. He didn’t see a problem with me pulling my thin strands into a pony tail the size of a two year olds, supplementing that, with a tiny, thin piece of bangs, struggling to look valid, across my forehead???

I talked to the person who used to hilite my hair, when I had enough to work with. (She was terrified to hilite it anymore for fear the rest of it would just fall out. Instead, she just kept trying to cut what was left, as best as she could.) I cried about the wedding to her and she suggested I go to a local shop and try a wig. I knew NOTHING about wigs. I was terrified, but desperation will drive you to try almost anything. The only human hair wig that resembled how I used to look, was too big for my head and had way to much bulk, but I bought it anyway. I thought I spent way too much, again, knowing NOTHING about wigs – little did I know that a really good wig would be 3 or 4 times what I had just paid! I took it to my stylist and she cut it and put “roots” in it, to try to make it look as natural as possible. I felt like my head looked inflated, there was so much hair. My stylist did a great job with what she had to work with and thinned as much as she could without allowing the cap to be visible. So it was either that or no hair.

I went to the wedding and people kept asking me what I did to my hair. Ahhhhgggghh, I wanted to run out crying. Why can’t they just enjoy the wedding and keep quiet about my hair, why??? I kept saying I just got extensions, but they would look at me like yeah, right. One family member said, “I’ve seen you with extensions before and it didn’t look like that!” Hmmmnn, really? Was all I could come up with. So, great, now I was so self conscious the whole night, I could barely eat or carry on a conversation. All I could see or imagine I saw, were people looking at my head. My husband thought I was over the top. After seeing pictures of myself from the wedding plastered all over Facebook, I wanted to just throw-up. I began to think that maybe my husband was right. Was I over focused. Was I just obsessed over something not that big of a deal? Then I began to answer it for myself: Yeah, I’m probably just too vain. I’m too insecure. What’s wrong with me? Why cant I be happy , Why can’t I see myself as pretty just because i don’t have all my hair, its not like I’ve lost an arm, a leg, my eyesight, for God’s sake.

Oh, these conversations were daily, as I went through my morning Starbucks drive-through, dreading to have everyone who knows me there, see the bulky wig! I went no where without it, though. Bulky hair was better than no hair! I began to pin the sides back to minimize the bulk, and that sometimes seemed to help. Then one day, while googling: best wigs, very best wigs, best wig ever made in the whole wide world, (just kidding) Voila! I stumbled upon Follea. I found a distributer about 2hrs away and made an appointment. I bought not one, but two. Hid THAT fact from my husband for a month, as the cost of 1 gave him heart palpitations. But I finally had a wig that felt like it belonged on my head! It was close to my scalp, and it MOVED like REAL hair does!! I was ecstatic!

But of course, we who suffer from this hair loss thing, know that the excitement isn’t simply happy ever after. There is the still the daily dealing with issues of how do I…. go to the beach? swim? go to the gym? get a chiropractic adjustment? a facial, a massage, OR, allow someone to give me a big hug without freaking, because it has previously happened that “MY” hair has been grabbed and pulled backward in the process!! These are just some of my daily anxieties.

Being seen without the wig, is a terrifying ordeal for me. If I take it off because my head needs a break, I worry someone will “catch” me without it. While I’ve found freedom from being socially humiliated with almost no hair because I now have a great wig, I’ve still got the “issue” of being “wig-less”. There’s still that woman I don’t want to see, staring at me after I take my makeup off at night and after my shower in the morning.

Finding this website only a day ago, has been like a lifeline. I can’t stop reading everything on it! I so admire you for starting it, for caring, for being brave enough. I’m still not brave. I still haven’t admitted to anyone that its a wig. Only my sisters and husband know. But I feel like I have an avenue now, where I can walk down and meet friendly faces and read similar stories that give me hope and encourage me to stop hating who I see in the mirror and get to love ME again, with or without my hair! Thank you, thank you, thank you, thank you, thank you… a million times over for doing this. You are an angel, a Godsend! Much love , Joanne

————

Dear Joanne –

Thank you so much for taking to the time to write and share your story! And double thank you’s for all your kind words. When I read your words, as I wrote you on Facebook  and emailed you yesterday, all I can think of is “I am you, you are me” and then I imagine us standing there pointing at each other, bursting into tears and hugging. I’ve been meaning to update “My Story” on the site and I think I’ll just paste yours in there because it’s pretty much the same, so it will save me time! LOL :) I’m constantly amazed how many of our stories are so similar.

Unless someone has gone through this it is so hard for them to intimately understand the magnitude of damage and toll it can take on our lives – spouses, family, and friends often don’t know what to say or can’t understand that it IS a VERY big deal. It’s pieces of us breaking off, slowly. I felt I was degrading before my own eyes, with no end in sight, no STOP button to push. Sheer panic. I often think of myself as Exhibit A of a life lost for over a decade, a prisoner to hair loss, but there are so many women like me, like you, who sometimes live their WHOLE life and never get past the effects of hair loss. I believe we have to get over ourselves, to heal ourselves. Let go of something that while we assumed SHOULD be ours for life, sometimes was simply on loan. Our hair. There is a STOP button I just didn’t see it before and perhaps it only revealed itself to me when I was ready to push it.

While there are still challenges ahead, yes, you mentioned many of them, gym, beach etc… once you decide to longer be a prisoner to this, a whole new world opens up. Once you make peace with wearing hair and then find the hair that makes you feel like you again, you start to feel more in control, or at least I did. I much rather ponder over how to get to the gym or what to do at the beach or in a massage and know that ALL the rest of the time I will feel good about myself. The longer you wear hair, the more confident you become in the hair. You start wearing the hair, and not letting the hair wear you :)  Ultimate freedom will come for me, when I truly do not care who knows I wear a wig, that will be freedom. “Yes, I’ll have the deep tissue massage. Oh, I’ll just put my clothes over here with my hair” and then just take off my wig and lay it on my jeans if that is what will be more comfortable. I’m healthy, I’m alive, and my hair is removable, the quicker we get over it so will everyone else right? I’m a work in progress.

We need to do what we need to do for ourselves to heal ours souls and bring us back to life, whatever that is. Throw it on, glue it on, shave it off or no nothing and take solace in the knowledge you can do something when you choose to. Hair is important, yes, I agree – but isn’t there so much more to life? We have to remind ourselves of that and it’s not easy, boy do I know it’s not easy.  I’m saddened to look back at my 20’s and realize I slept through it all and watched it go by in a fit of a crying blurred haze.

I know you’re early on in this new direction in your hair journey, as am I, but doesn’t the road look so much smoother? I even think I see a rainbow on mine,  I bet you can see it on yours too :) There’s hope for all of us.

XOXO

Much love,
Y

{ 17 comments… read them below or add one }

joanne October 19, 2012 at 4:06 pm

Thanks Y. I feel like we are long lost sisters. I just want to go shopping, grab lunch with glass of wine of course and share some “omg” gossip, after every online chat. You’re so truly beautiful. xoxoxo

lina October 19, 2012 at 4:26 pm

Thank you Joanne for sharing your story.
Like Y wrote, you are me, I am you. Your words and feelings are exactly my journey. To say that I understand 100% is an understatement – I understand 1000% and while that does not change the fact that my hair has “adiosed” me it is so comforting to know that I am not alone and that my feelings and even I am normal.
I am around 3 months into the hair wearing version of me and it took me 25 years to get here – uh huh, that’s right. I had a low day this week when I took of my wig and really saw my reflection in the mirror – you know, I look in the mirror if I have to without my wig on but kind of look through the mirror you know? I hit a “oh shit” is this really what I look like and then I said the “no fair”… well, honey, life sure ain’t fair and I have finally come to realize that life is so much more than hair.
At this stage, I think I am sadder for the all the tears, anxiety and lost living than I am for the strands that clogged the shower drain or the vacuum.
You know, I wish we all lived close together, I’m in for the Starbucks Group. We would be spotted a mile away – we’d be all the chicks with the bitchin’ hair – we’d make them all jealous – wouldn’t they crap if they knew! Haha, I just laughed out loud and after the week I’ve been having – it’s a miracle :-)

This place is a sanity saver and a relationship builder.
I thank you Joanne, Y, Electra, Angie, Phillygrl(miss her), Devastated me and all the other awesome, amazing, inspiring, beautiful women on here.

Big hugs to you all
Lina xxoo

joanne October 19, 2012 at 4:57 pm

Wow, I know that looking “through” the mirror. I do it all the time. We really all are each other. So coincidental or not :) that you replied, Lina, I just read your story and replied to you, not realizing till afterward, that your story was from August. But that’s ok, my reply is still full of caring for you :), even if it’s a little late.
I’m in for the Starbucks group too, then Shopping, wine, gossip – and enjoying the head turning when everyone sees all the chicks with the red carpet hair. Oh yea! Thanks so much Lina. I love meeting all of you and feel incredible connecting with others who get it. Except the past two days I can’t get anything done bc I’m on this website so much. lol.! I think we need a yearly conference in the Carribbean – I see spa time on turquoise waters. xoxoxo

Electra October 19, 2012 at 5:12 pm

Welcome new friend. We need to get a hl convention so we can all meet in person!

lina October 19, 2012 at 5:16 pm

Joanne, I just saw your post and thank you and I replied to you there.
Y, gave me the heads up.
You sound super fun and let’s not rule out the Carribean conference :-)

Strangely, I hid hair loss for years, it was my worst fear to say the words out loud or tell anyone and when I did, getting dismissed was brutal: “it’s not that bad”, is that like, “you’re not that ugly, you’re not that fat”…
I would make myself sick with tears, not eating, self loathing, anxiety and lie in bed unable to sleep with thoughts and here I am now spilling my ugly secret with “strangers” and cracking jokes about HL – well not that hair loss if funny, but, you know…

Being able to connect with women who truly understand, who echo my thoughts and feelings on this HL journey has been paramount to my healing and I am so thankful for you all.

xxoo

phillygrl October 19, 2012 at 6:19 pm

Welcome Joanne and WOW! Tears rolling down my face reading your story. My story. ALL of our stories.

Hey to all of you beautiful women on here! Ive been in and out. Trying to wait for something good to report instead of just saying Im gonna do it and then I dont. Annoying to myself, let alone others!

You all know the deal, one day you tell yourself its not so bad and then one picture or one glimpse of a reflection and …tailspin. When the image in your head doesn’t match the reflection.The worst.

I also started making myself stay off the computer for a few days at a time because it gets too obsessive. Hello OCD ! 😉 lol

But I think of all of you all the time. Where are the women like you in “real life”?! No way I’d ever talk about this with anyone I know. I just smile and keep moving…and get back home as soon as I can. 😉

Took a small baby step that’s not worth mentioning….lets just say I ended up getting a 30 minute laser treatment even though I know its a total scam. My only excuse is that it was free AND the lady was so nice I couldn’t refuse. haha So I left and drowned my sorrows with a double shot mocha latte……….. :)

“Y” says baby steps and Ive seen others on here prove its true ( SHOUT OUT to Lina and Electra !!! ) Im just being stubborn. I want MY hair back. Back the way it was. Until I get over that and make that phone call to it ( Y,haha) I will be stuck.

I LOVE reading when new women find this place, I remember how it felt when I did. What a relief to know Im not crazy or the only one going through this problem.

Cheers and a raised glass to the HOT chick that started this site!!
<3 <3 :):):)

lina October 19, 2012 at 6:48 pm

Phillygrl! Yay, I’ve missed you. I love seeing new people too, well not because they are experiencing the HLBS but because it’s a relief, a save haven of sisters who really do get it.
Never apologize for being down, do you know how many fetal positions I’ve lied in, pools of my own tears…
We are all here for each other, ups, downs, tears of joy, laughter and for everything under the rainbow and sometimes that doesn’t even have to do with hair loss. We’re friends here, we care about each other, our journeys, our families, our pets, the whole enchilada!
I’m happy to know you all.

Joanne, welcome to this addicting site, I feel good things for us all. Who knows, maybe one day we will all meet.

Xo to you all

Beth S. October 20, 2012 at 7:28 am

We can all relate to Joane’s story. I especially identified with the husband’s reaction as my husband keeps telling me that my hair loss is “all in my mind” even though I can barely cover my scalp anymore and that I look “perfectly fine”. I think this occurs for two reasons, and one is that men truly don’t notice certain things like a mess in the kitchen, or a new lipstick, hairstyle, outfit, etc. It is funny though, that they can spot a new scratch or dent you made in the car from a mile away! I call this phenomenon “male pattern blindness: — LOL! The second reason may be that your spouse may just be at a loss as to how to respond to your despair, after all it is not something he can fix, so he tells you that you still “look fine” and I really believe that to him, you probably do! I know it is sometimes infuriating, but we should at least be grateful that they are not the shallow creatures we sometimes think they are!

And speaking of shallow, the best thing for me about this site, is realizing that my emotions surrounding hair loss seem to be both normal and universal. I also have chastised myself for being so “superficial” as like you said, its not like you’ve lost an arm or a leg, yet apparently I am no more vain than anyone else — it is devastating for all of us.

DevastatedMe October 21, 2012 at 9:38 am

Joanne – I loved reading your post! I applaud you for writing to Y, the wonderful WHLP Admin, and telling your story. I love seeing new people find this website!!! This was literally my life-line. I googled hair loss until my eyes popped out. This is THE only site that I could feel comfortable sharing, sobbing, showing, and seeing my way through HL. I have learned soooo much about HL and moving on, and could not have even gotten out of the fetal position if it wasn’t for this site.

Not to say that I’m cured… There is no cure to my HL, but emotionally, I’m totally rebuilding, and physically, I’ll get there too. This site had given me a sisterhood like no other. I can’t tell any of my “organic” friends or family about my HL. I feel ostracized, an outcast, defective, a woman that can’t grow her own hair. How Freaking Depressing!!!! But, I can tell my “virtual” sisters and friends about everything!! And, I can even meet up with people in my city with the same affliction. This site IS the best for me.

Welcome to the network, post all of your questions!!! There is sooooo much knowledge on here, that I feel like we all need the Dr. abbreviation before our names . Dr. Living Your Life, Dr. AGA, Dr. Supplemental Hair, Dr. Moving on, Dr. Happy, Dr. Acceptance, and you get my drift!!!

Let’s move forward together!

Regi October 27, 2012 at 3:58 pm

Hi,
I just found this site and after reading all your stories I feel like I’ve finally found a place where I can share my fears. When I was 20 my hair started to thin and ever since I have had a very obvious part (at least to me). So I’ve been living with this for 18 years and felt like it was ok, as long as it wouldn’t get any worse I could manage. Now 4 months ago I started school again full time, I’m taking care of 2 kids and my husband is working long hours. I want to become a teacher but I’m already afraid that my future students are going to call me “baldy” or other names. I’ve been losing hair left and right and my doctor told me it was the stress, but I’m caught in a Catch22. Each hair that falls out (and there is a lot) pushes me down another spiral of panic and anxiety and I can hardly function anymore, so the stress is unmanageable. Everybody I tell says “oh, it’s not bad…” but I can see it. I can almost feel the hairs seperating from my scalp and it’s EVERYWHERE. I’m already on antidepressants, but I just want to curl up in bed and forget about the world. I’m afraid it’s really affecting all aspects of my life. Will it ever get better? I don’t know. I would like to look into getting a wig, but where can you get one that doesn’t look too fake? I live in Ohio and would be willing to drive anywhere for a good one.

Lace December 1, 2012 at 8:04 pm

Just a quick reply to Regi above: you mentioned that you were on antidepressants. They can cause hair loss. Have you spoken about your hair loss to your pdoc?

Mira December 6, 2012 at 1:41 am

Joanne and everyone else, Thanks for your stories! I’ve returned to this site after many years and it is total therapy to be able to read everyone’s stories and share the emotional rollercoaster that is hair loss.
Regi, I too am in my late thirties and my hair loss has accelerated since the birth of my little girl. I feel I cannnot hide it any more and need to go down the path of wearing hair. I saw some great wigs a few months ago but was told that I would need to cut my hair very short in order to get a good fit and still haven’t been able to bring myself to do that as that will be the final farewell to my bio hair ( I like that term, as opposed to ‘real’ hair which implies that a wig/any other solution is not!). A recent photo taken on a sunny day with my family has prompted me to pull my head out of the sand, re discover this site, and also seriously begin the research on getting a good wig ( I live in South Asia so would probably look for places in Europe). I need to accept that a decent wig is going to look way better than my current combover! It is ridiculous for a grown woman to wear a hair clip just to keep a few strands in place!
When I look back on the last 18 years of my life, I can’t say I haven’t enjoyed them, they’ve been good, but there has always been a constant fear/doubt/paranioa about how my hair looks. Looking at someone’s eyes when they chat with you to see if they are looking at your scalp, terror at a sharp gust of wind, casing out a restaurant in order to avoid the seat with the most overhead lighting, sitting in the shade on a sunny day, feeling like an idiot wearing a head scarf while swimming in the sea and panicking at the wave that’s gonna knock it off, etc etc. I know you will understand. If I am lucky enough to have another 38 years of life, I’d like to enjoy them fully without worrying about the presence/absence of some Keratin on my head.
Much love to everyone on this site, you’ve helped to keep me centred today!

Mira December 6, 2012 at 1:52 am

PS Did I mention the trauma of going to the hairdressers? I moved to a new city a few months ago and went for the first time today. Everyone was so kind and tactful that I seriously overtipped!

Stephanie December 20, 2012 at 1:12 am

Dear Joanne (and all),

I can’t explain what it feels like to read your testimony, I was diagnosed with Rhumatoid Athritis 4 years ago, I’ve been steadily loosing my hear since and even more so with my latest treatment. I’m “luckky” enough that the shedding is even all over, but I’ll be looking into wig options after the holiday season as I’m hoping to make the wig transition before the hair loss is too visible. I’m having a very hard time getting my head sorted about this, but I’m hoping that already having the wig sorted will help as dealing with RA, single mum, full time work, it’s already enough for me. Thank you so much for wirtting your story, best of luck :)

Julie January 6, 2013 at 2:56 pm

Hi Ladies,
I stumbled across this website when I clicked on a hair loss link advertised on Facebook. I am new to my hair loss journey as I was just recently diagnosed with Lichen Planopilaris (scarring alopecia). I am not only faced with permanent hair loss but it is also quite painful.
I am trying to tell myself and my loved ones that it is only hair, I am lucky that I don’t have a disease that is going to kill me….some days I believe it but other days I am devastated and in a panic. I am going through good days and bad. On the good days I believe that maybe I’ll be lucky and my health will improve before all my hair falls out and on the bad days I feel so ugly and disgusting and hopeless.
My biggest worry is how my husband is going to feel about me when I am bald. We have only been married a year and a half. I was healthy and beautiful the day he married me and within a month my health took a nose dive. Of course he is a wonderful man, says he will love me anyway.
I hope I will be able to find comfort in this website. Reading what others are going through will make me realize that I am not the only one going through this nightmare but also it is a little frightening to know how devastating it is for others as I am sure it will be for me.

Tamara Lee March 22, 2013 at 7:05 am

I am so happy that I have been able to find this website. But also deeply saddened about my conidition, because I feel like its no hope. I have recently been diagnosed with scarring alopecia, and I am 32 years old. I am in the process of different treatments, and I still have a nice amount of hair, but in the front my hair is barely hanging on and , and I have thinning at the top of my head and patches appearing. I keep trying to deal myself that it could be much worse, but Im losing hope. I was always the female that could wear my hair long or short. I recently decided to go natural last year, after years of relaxers. My issue is I am single with no kids, and worried that I will not be accepted my a man with this condition, not to mention I want my hair back!!!! Im in tears while I type this because I dont understand whats happening. I am healthy in all area that I know of, but just wish there was a solution.

Stine April 2, 2013 at 1:25 am

Tamara, I feel you. I am only 21 and have androgenic alopecia most likely. I live in constant fear that I will be forever alone and curse nature every day for bringing this upon me, especially THIS early. I ask God every day that if he had to give me hair loss, why can’t he wait until I’m at least 40 and married. No man will want me now :(

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