Replies to This Discussion

Permalink Reply by Paul dann on November 10, 2009 at 6:42pm

Hi Stephanie, sorry to read about your news. I think what your going through now is no different to now we all felt when we first found out that we had alopecia. Its good to share your feelings with people who understand what your going through. You know where i am if you want to stay in touch.

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Permalink Reply by jessie thomas on November 10, 2009 at 6:49pm

Stephanie,

I have been there. I went through a fit of depression where I wouldnt go out of the house and I would just lay on the bed and cry. The thing that made it worse for me was the utter lack of knoweldge or care that any of the doctors had. I have heard the same story about doctors not taking it seriously many many times. I have been loosing my hair for a little over a year now,my scalp is clearly visible in many areas, and I still can not find a doctor that will give me diagnoses..What I have learned is that we cannot rely on these doctors, most have very little knowledge about hairloss and dont want to take the time. We have to rely on eachother..

Just hang in there girl, be strong, and remember to be thankfull that you do not have a life threatening illness or something, b/c it could be much worse. (I have to remind myself of this everyday.)

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Permalink Reply by Andrea on November 10, 2009 at 8:57pm

Hi Stephanie,

It's hard to come to terms with most any chronic diagnosis. Something that is likely to be a part of your life for the rest of your life will need to be fit into your life. Trust me, I've been there. In some chronic illnesses it requires a complete revamping of your life. Alopecia doesn't require that, but it does require a self evaluation. Are you your hair or are you the woman underneath the hair?

As far as doctors, they often don't take women seriously...especially chronic conditions. In 2003 I was involved in a massive head on high speed collision. I escaped with relatively few injuries (praise God) but every joint from my ribcage down sustained damage. In the following months I knew something was wrong but I got brushed off as "deal with it." It took an aggressive search for a doctor who listened and knew correct diagnostics.

I hope you can come to terms with your diagnosis, sooner rather than later. Do allow yourself to mourn the situation but don't allow it to become your focus. Remember, you are more than your hair! Blessings.

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Permalink Reply by Sue Helaine on November 10, 2009 at 10:12pm

Hi Stephanie, I'm there with you. I've had the condition for a long time now and haven't done well with it, yet always trying to do the best I can. I always get complimented on my look, having been able to conceal my condition, but I always feel sad inside ...well often. Hang in there. Perhaps a wopnderful website like this will hep us both to cope and accept!
Sue

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Permalink Reply by Alicia Duncan on November 10, 2009 at 10:13pm

Hi Stephanie

I am newly diagnosed as well. I find myself experiencing some serious depressed feelings sometimes, too! My friend who was hearing me out said, "Honey, you are going through LOSS. All loss is sad. The loss of a loved one, the loss of a relationship, or the loss of part of your physical being. But you haven't lost your beautiful soul." I cried. She concluded with, "Honor the sadness, feel it, but don't BECOME it. Let the experience make you a softer, more loving human." So now, everyday, I allow myself to feel the grief. I sing India Arie's song, "I am not my hair" and I weep. Then I decide I must be bigger than this condition. So, here are some things I do to help with my grief that I would recommend:
Make sure you move or exercise in some way everyday. Your brain is going through a lot of sad thoughts and creating sad emotions. After you are done with a grief session, get out and move! It's SO good for boosting good brain chemicals and for reminding yourself that alopecia doesn't take away your health. Even just going for a walk is uplifting. Exercise is essential for fighting those depressing thoughts and feelings. Think, "I have to take care of my brain." :)

Nurture yourself in some way. Be really kind and gentle with yourself. Say nice things to yourself. Treat yourself like you would treat your best friend if they were going through this. Give that same love to yourself. Self love is the first step to self acceptance with alopecia.

Purposefully seek out someone who needs a bit of help. Even if it's volunteering with animals or young people for a short time. It will totally make you forget about yourself and your situation for a bit and help you see how important and valuable you to others are regardless of the alopecia. Helping others helps healing!

Stay connected and keep being honest with yourself. Connecting with compassionate humans helps healing!
Bless you and be well, Stephanie. You are not your hair. You are the beautiful soul that lives within!

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Permalink Reply by Karen's Wigs on December 16, 2009 at 4:40pm

Alicia, your words are perhaps the most profound I've ever read here, or anywhere else for that matter. Thank you.

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Permalink Reply by Tara on November 10, 2009 at 11:07pm

Stephanie,

Whenever you first get Alopecia it definitely is a major struggle. I got it when I was about 3 or 4 so for all I knew it was just something I was born with. Struggling with it while growing up was a major thing. I don't know how old you are, but I can say that it takes time to come to terms with it and to truly understand it. I have now reached a point in my life where I accept that I am a stronger person because of Alopecia and all that I have experienced and had to deal with and I'm only 20. I recently picked up a book in a Christian bookstore that I thought looked like the dumbest typical "Christian book" but I strongly suggest it. I thought it would be a book that I would make fun of throughout but I still decided to read it and I honestly think that what I have learned from it has healed me. I don't know if you're a Christian or not but I strongly believe that God gives his children healing and comfort. If you have any questions feel free to send me a message. Otherwise, please check out the book it has helped me A LOT over the past few months, it's called "Jesus the Healer" ... yes very much what you would think the title would be!

Good luck!

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Permalink Reply by MiNAH on November 11, 2009 at 3:10am

Put up some photos so we can see how beautiful you are...we are all here for you!

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Permalink Reply by Mary on November 11, 2009 at 9:10am

Stephanie,
I am so sorry you have alopecia. I know how you feel. We never knew what it was either. If you still have hair like I do, my derm. prescribed Clobetasol Propionate Foam 0.05% applied twice a day on my patches, use Nioxin shampoo, especially formulated for us, and she prescribed me taking a vitamin called Biotin, at least 2,500 mcg. tablet once a day. They don't sell it like that so I buy the 5000 mcg. and take it every day. She also said to eat a fruit or vegetable of a different color every day. I've been doing that for a year. It's working, many of my patches have grown back. The only thing I don't use now is the foam, she told me to stop it after growth started. But I won't stop using the other things because I'm afraid I'll start losing hair again. Do it while you still have hair. Obviously, my son lost his hair about 2 years ago right before graduation of high school. It was horribly hard for him and I can imagine how much harder it is for you as a female. He's doing well now, he has always been a confident person thank God and I think that has helped him, as well as extremely supportive friends and family. It's so strange it happened to him, and then a couple months later I noticed patches. We never knew what alopecia was!! I hope you can find some peace with this condition in time. I will tell you Alopecia World is a great source of understanding and the folks here are awesome. I like to hear the positive attitudes of many here although I will admit I don't feel so positive alot of the time. It's a yoyo of emotions ... but know you are not alone. Take care dear.

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Permalink Reply by Liz on November 11, 2009 at 9:38am

I'm really sorry that you are going through such a hard time. I am now 50 years old, but I started losing my hair back in my 20s, so I have had some time to get used to it. I have used many techniques over the years to adapt. I've worn my own hair short and blond most of the time, which helps a bit to disguise the thinness. On and off, I have worn wigs and hair pieces, which I started doing again about 6 months ago. Do you have a close friend or relative who might be about to help you find your best look? A good friend encouraged me to wear wigs again, and I have been feeling really confident because I'm getting lots of complements. Whatever you do, I hope you can feel better soon. Liz Blair

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Permalink Reply by Tonia M McCracken on November 11, 2009 at 10:43am

Every thing you are feeling is normal. I have had A for 6+ years. About 2 years ago stress put it in high gear. I have seen many doctors. There is a reason they call it PRACTICING medicine! They dont have a clue what to do with us.. I had one Dr. say "Well, it's just hair". Needless to say, I have not been back to see him. I have stop looking for the cure and about 5 months ago started working on acceptance. Accepting myself without hair. It may take years to get there but I hope someday my cute little bald head with be as normal to me as the glasses on my face.
please, feel free to write me.
I love to garden. The pix is of a poppie i grew.
Tonia

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Permalink Reply by Barbara on November 11, 2009 at 2:01pm

Hi Stephanie,
As someone who was fine one day and then shocked, terrified, depressed and stressed when she discovered bald patches on her head, I understand how you are feeling. I was so terrified of what was next that I was physically sick. My first thought was to cover it, hide it, until it grew back. then I found out that there is no definitive cure, that maybe my derm treatments will work, maybe not. Maybe it will grow back, maybe not. Maybe it will go away (remission) and never come back again, maybe not.

A couple things helped me:

1. this site. I got lots of support and reassurance here. I got information,opinions,resources and I made friends - one in particular I email every day!
2. I went to the dermatologist . I am getting a treatment and having success with it (steroid cream and minoxidil) or this AA is just running its natural course and would regrow with or without treatments. Who knows.
3. I bought a 3/4 wig within weeks. At least I didn’t worry so much about someone walking up behind me at my desk and looking down on big bald spots! The ¾ goes over all my own hair (my real-hair bangs show) and it gave me confidence to go to work. It has been months now and no one has noticed other than at first I got a lot of , “Oh – you’ve done something different to your hair!” Or, “I like what you are doing to your hair now. Are you growing it out?”
4. I realized I had a game plan. If it gets worse (which it did for months) and I cannot continue with baseball caps or my ¾, I’ll get a full wig. I know now that I won’t be happy about it, but I will survive and not be depressed (and “depressed” is such an insignificant word for the devastation I felt!).
5. Confided. Personally I chose only to tell a handful of people. I didn’t want to be defined by this condition, and I don’t want this condition to dictate to me!

I hope you feel better soon, because AA has a mind of its own. But I TRULY understand the feelings you have when it first happens!

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