Always on My Mind

by Jo
(California)

I am a 30-year old female going through what is quickly becoming one of the toughest challenges in my life. I never thought that losing hair can be that devastating. After all, it's just hair. I say it to myself every day but I am yet to believe it.

It started in January 2009 and has been going on for the past three months with no break and no signs of improvement. It came very suddenly. One day I noticed more hair in the shower, a small handful on the towel, and a whole bunch on the brush. I have experienced increased shedding in the past, so at first, it seemed like one of those times.

Typically, it would stop after a month or so and not happen again for a couple of years. This time, a month went by, then another one, and another one... I have lost probably close to a half of my hair, with my part being about double the width it was 3 months ago and my scalp showing in a few spots on my head. There seems to be no pattern to the loss - it is all over. My hair comes out so easily as if it was barely attached. It is a scary feeling.

I had some blood work done, checked my thyroid, and saw a dermatologist who diagnosed me with Telogen Effluvium. He was unsure of the trigger. I had a severe case of TMJ (Temporomandibular Joint Disorder) last year and went through a period of excruciating pain and true agony over that. I have been on birth control for about 9 years now. And I am a college student stressing a whole lot about my school work. The doctor said those were all possible factors.

For the past month, I have also been experiencing this really troubling scalp pain, burning, itching, and tingling. It feels like someone was constantly pulling my hair. The doctor said my scalp looked fine; it is not red or irritated. I think I read somewhere that some TE sufferers may experience this strange sensation whose cause is not very clear.

Even though I have done so much research about TE and on an intellectual level, I understand it and seem to have accepted it, on an emotional level, I am a complete and total wreck. I tell myself every day that I am not my hair and that I cannot let this consume my life. It is truly easier said than done.

There has not been a week when I wound not cry over this and feel like it is more than I can handle. How can hair do all of that? I fall apart every time I pull another handful out. It is not something you get used to. At least, I have not been able to. When will it stop? When will my hair start growing back? What if it does not? What if the doctor missed something? Will I lose all my hair before it gets better? These questions keep running through my mind day and night. It is the unknown that is most exhausting.

I think it is extremely important to share our stories. I did not realize how many women were out there feeling exactly what I am feeling right now. We all know that it is just hair but we also know it is so much more than just hair... It is about our confidence and self-acceptance; it is about that shampoo commercial that you can no longer stand to watch; it is about the extra time you have to take to cover the thin areas; it is about avoiding mirrors and bright lights; it is about feeling the wind not in your hair but on your scalp; it is about accepting what you cannot change; it is about believing that you are stronger than that; it is about holding your head up high and saying to yourself that you are beautiful no matter what. It is so much more than just about hair...

To all fellow sufferers - be strong and please share your stories. It may be your story that will make someone out there feel like they are not alone.

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Always on My Mind

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Dec 14, 2009
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star 		SHADOW
by: PATRYCJA

HELLO
WHEN I'VE READ YOU STORY I HIT MY AND I COULD NOT STOP CRYING. I FEEL EXACLY LIKE YOU DESCRIBED.
MY HAIR WAS MY PRIDE ND GLORY FEW MONTHS AGO AND NOW IT IS EMBARASSMENT. I TRY TO BE STRONG AND THINK POSITIVE AND I CAN'T WAIT WHEN IT'S OVER. THAT WILL BE THE BIGGEST RELIFE IN MY LIFE.
THE HAIR LOSS CAN BE LIKE A SHADOW THAT ALWAYS FALLOWS YOU AND IT'S ALWAYS THERE "ON MY MIND".
Nov 07, 2009
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starstarstarstarstar 		Jo I feel you
by: Gabby

Jo...
Though I am not suffering your loss, you made me cry as my soon to be 16 year old daughter has been suffering acute hair loss since March 2008.

My daughter dances and has to have her hair done for comps and this is how I noticed what was happening.

She was born with sooo much curly hair that she did not look like a new born and up until march 2008 had the most thick luscious hair, now it is thin and so much of her scalp is showing that she basically has to wear her hair up in a messy bun to cover her scalp.

For the past nearly 2 years i have researched and we've seen 2 demertoligists, 2 naturopaths and also 2 tricholigists to ascertain why this was happening. Nothing has helped either physically or mentally. The worst thing being is that you feel like the health professionals don't really care.

I know and hear what you say it is after all only hair. But tell that to my heart and brain. Unfortunately society defines us not by who we are inside as humans but as what we look like on the outside.

My daughter luckily enough isn't as stressed by this as I seem to be, unless she is keeping it from me.

Your post has helped me to realised that we are not alone. I just wish and pray that some day soon there will be a cure for this. So that no-one has to suffer. I know that there are worse things in life (my own mother has been battling cancer for the last 3 years) but it does not stop me for fearing for my daughter's future.

Thank You Jo and my prayer's and thoughts are with you and all the other sufferers.
Oct 18, 2009
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starstarstarstarstar 		Still helpless
by: Agnes

Hey..... You had make me cry.You spoke from my heart and read my mind.Everything you feel I feel the same, unbelievable how just hair could change the way you feel about yourself .I have TE for 2 years now and still don't know what I could possibly do to get my old me back.I would shed for 3 months then it stops for 4 or 5 then everything starts happening allover again.

Two years ago I decided that I wanted to make my hair grow a little faster ...I looked on the internet what kid of vitamins can help me do it . That is where I went wrong ! However I had come up some and, then after taking those for about 3-4 months I experienced hell.My scalp flamed up kind of pinkish looking crusty ,itchy ,irritated,all at once then A major hair loss fallowed it for months I had lost 50% of my hair.I went from pretty to "fugly". I felt like I wasn't a woman anymore I even cut my own hair down to 2 inch long ( easier to work with ) .

Anyway I stopped taking vitamins .I only take organic multi's once a day ,wash my hair 2-3 times a week with jojoba shampoo and massage my scalp .I really don't know what is out there for me to help me out .All I can do is just pray that one day I'll look "beautiful" or at least myself again
Jun 10, 2009
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starstarstarstarstar 		you made me cry
by: m

reading your story made me cry because its the first time that ive read about somebody else going through just the same thing as i have "still am "there is not a moment that goes by that i don,t think about my hair problem or lack of it . i,m so sad for you to be going through this as i know how painful it is but i,m also very greatful to know ther is someone out there that understands me . "AT LAST" x
Apr 25, 2009
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starstarstarstarstar 		Thank you
by: Anonymous

Hello,

Thank you for sharing your story. I am a 29 year-old female and currently experiencing some extreme hair thinning. It gives me the chill sometimes when I look at it. It starts with the partitioning line and starts to widen and goes further down toward my neck. Just writing this gives me the chills and I start touching it for some miracle that some hair might sprout.

Thank you your post because it gave me strength and confidence to face this. I agree with your note of self acceptance as I am doing this now.

I am planning to run some blood tests as well to check any possible problems/lack of vitamins and so forth. I have done a lot reasearch and I even went to hair herbal therapy and the root/pores of my hair are so clogged with oil/sebum. I am changing my shampoo to organic as some ingredients from the shampoos out there might contain some chemicals that might harm the scalp. I have some hope that changing my shampoo might help clear the pores and more hair might grow. Exercising is also the next step for me. Worse comes to worse, I will shave it and wear a wig. Wigs out there (as I read) can be quite comfortable and the scalp will still have oxygen to breathe. Wearing a wig is like wearing heels if you are short or wearing a padded bra if you want full front or even wearing make-up to cover blemishes. Just writing this makes me laugh now. Like you mentioned, we are beautiful no matter what. Thanks for helping hold my head up high.
Apr 24, 2009
Rating
starstarstarstarstar 		Awesome post!
by: Big J

Thanks for sharing this story on balding. We need more posts like this. I hope to see more from this blog!

Big J

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