It's been a (long) Year

So, I joined this site and group almost a year ago, but never really new what to say, what to ask? I've been "dealing" with this for about a year--my hairdresser first noticed two identical "bald spots" on either side of my head, above my ears. I didn't care at first becuase they were so small, and I thought it was from the hair pins I put so tightly in..but once, while on vacation, I noticed the amount of hair falling was a ridiculous amount...and from there, it has been a downhill battle.

I've been "blessed" with a head full of hair; it's not really long, shoulder length, but thick hair in the African American community is a blessing and prized possession, so I hate seeing it go. And now I am loosing eyebrow, some eyelash and nose hair (the eyebrows have become noticable).

My brother lost his hair at 5, including lashes and brows...it has fully grown back now that he is 10...and it would be a lie for me to say that I don't wish the same outcome...but, according to all these websites, I'm the one with the strikes against me...I have allergies, ezcema, and a family history of alopecia. I'm afraid of developing other autoimmune dieases. However I am most afraid of being alone.

I've been to about six or seven different doctors in the past year. Everything from a dermatologist, to an ENT, hemotologist, anything you can think of...and they all say stop stressing...wtf does that mean? If ridding yourself of stress was the cure to everything in life, you don't think we'd do that sooner?

I just want to be at peace with this...

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Replies to This Discussion

Permalink Reply by Angie on April 29, 2013 at 1:38pm

Hey Marissa,

I know this is a very difficult journey, one I wish none of us have to take. I'm glad you signed on today. You need to be with friends who REALLY understand. First of all be careful with the internet; anybody with a computer can put things on the internet. I know that saying" Stop stressing " get on your $$%%$@ nerve. They just know what we are feeling. I know it is hard Jan started my 3rd year, but it is important to find a way to release the stress. I developed T.E, another hair condition, which can be developed by stress. Nothing good happens to our bodies with stress. Your brother hair regrow, so you know it can happen. People with autoimmune diseases hair do regrown.

We are here for you, reach out any and always. Check out some of the postings. Work on doing some walking or running it's good for the entire body, mind and soul. Sista I know it is hard, but know we are here. STRESS will take things to another level. Each day will get better, it takes time or time for some. Are you getting treatment for your A.A?

Permalink Reply by Marissa on April 29, 2013 at 2:30pm

Thanks Angie,

It's actually because I've been reading everyone else's post over the past year, that I finally wrote something. I've been giving shampoo, Kenalog Spray and stereoid injections. Because I've had so much hair, the dermatologist don't see my"case" as a big deal. I am trying to get into the habit of focusing on other things...but I easily become sidetracked and a little depressed. Talking to my sister and best friend, they just say, "sorry", idk what good that does...and since my brother is/was so young, he doesn't really understand what I'm going through.

Permalink Reply by Weston D on April 29, 2013 at 2:34pm
Hello Marissa,

Many alopecians seem to have tramatic experiences or stress resulting from such events. That said, it is hard to move past them and the new worries about hairloss and the way people treat us dosen't make it easier.

As for feeling alone, I recommend you is this site to find others in the area or attend on of NAAF's conferences. I myself have been surprized by how many of the same emotions I share with other alopecians. It helped me cope.
Permalink Reply by michelle on May 2, 2013 at 12:03am

Hi Marissa,

I joined this site a couple of months ago. Up until that time I knew no one that Alopecia and in my case Alopecia Universalis. I have now lost all of my hair...eyebrows, eyelashes (some has come back) and the rest of the hair on my body. This site most certainly builds up your alopecia community. I think finding doctors you trust is the key. I've tried different treatments...cotizoid creams and shots (which were extremely painful) and Rogaine.....none of which worked. I am now trying DPCP..I'm taking it one day at a time...accepting that this disease is unpredictable. I don't think its as simple as stress causes AU...it doesn't...its an autoimmune disease. However I do think that coping with stress can only help...as it does with any other disease!!!

Permalink Reply by Fay on May 28, 2013 at 7:19pm
Hi Michelle,
I agree with you. I have Alopecia totalis/Universalis too. I have no hair on my entire body. I am as smooth as the day I was born. It helps telling people you are bald so it is not a surprise later during the big reveal. Honestly, I have not walked out bald yet because I know so many people at work are curious in what it looks like. I'll know when it is right to go BALD. I will rock a great pair of sun glasses, bright lipstick and big flashy ear rings.

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