Replies to This Discussion

Permalink Reply by Lyndsey Pitchford on June 20, 2013 at 5:00pm

Hi there!
I just want to say first of all that you are not offending anyone. The first patch of hair loss is the scariest I think by far, not knowing what is going on or what it will progress to is horrible and I completely relate to how you must be feeling.
Unfortunately with alopecia no one can really give you answers about how much hair you may lose or whether it will grow back, fall out again, etc. This is the worst thing about alopecia and it is very scary in the beginning but accepting that it is happening and that you cannot control the hair loss itself is important I think. You can still control your appearance however even with drastic hair loss. There are amazing wigs and topper systems out there and some of us also found it very liberating to shave off what we had left. I have lost the majority of my hair to alopecia 3 times and I now have a variety of wigs and head coverings which I change daily, sometimes I have long blonde hair and then a red bob. I also shave off what I have left and sometimes go out bald. I try to have fun with it and make the best with what I've got.
I am not trying to jump ahead to suggest you should shave your head or get a wig or anything like that I am just trying to say don't fear the worst because that's right now at the very beginning, whatever happens with your hair, it will get easier to cope with if you accept alopecia for what it is. This is hard I know and may take a long time but keep reminding yourself that you are much more than your hair. I know you said you are self-conscious of your appearance. I have struggled very much with my appearance also, not just because of the alopecia but I also have weight issues, as I am in recovery from an ED and so am bigger than I used to be and find that hard to come to terms with so I feel I can relate to what you're saying. Make sure you give yourself little treats to make yourself feel more confident at this stressful time, buy that piece of clothing you've wanted for ages, or get your nails done or have a pampering session at home, you deserve it!
And if you ever want to chat just send me a message. Things will get better, the first bt is the scariest.
Sending my best wishes!

• ▶ Reply

Permalink Reply by Sophie on June 21, 2013 at 10:04am

Hi Lyndsey,

I am so greatful for your reply. It's really nice to know that youre not alone and that there are other people who know what youre going through. I think like you said that i just have to take it as it comes and thee are going to be ways to cope and there are ways to cover u in the meantime. Im so sorry to hear about your situation but im very proud of you for the way you are coping and the way you sound so very positive. Youre inspiring. Thank you again for your help friend. xx

• ▶ Reply

Permalink Reply by Ivan on June 21, 2013 at 8:04am

Sophie,

The last three people who came on here complaining about little patches of hair loss were hunted down and eaten. Unfortunately carnivores prevail here! Many women dream of being eaten but personally the screaming disturbs me.

Could you be the first person to relate to my 'humour?' I doubt it.

I remember the feeling of terror, and it increasing as the condition worsened. I guess that most sufferers relate to that. What you are feeling is normal. I also recall feelings of revulsion. I'm so ridiculously obscene!

You have come to exactly the right place for moral support and practical advice. Just wait a moment I hear it coming. I have amazing hearing.

I'm off to play golf though. Men are so selfish. Did you know that?

P.S. I see that some brilliant advice has already been posted. So many caring people.

• ▶ Reply

Permalink Reply by Sophie on June 21, 2013 at 10:06am

Hi Ivan,

Luckily i do get your humour and i like it :)

Thank you for your support and making me feel welcome here and hope you enjoyed the golf.

• ▶ Reply

Permalink Reply by KarenGinny - Iowa, US on June 23, 2013 at 2:10pm

Sophie, Hello! Just wanted to say that you are in the right place for discussing hair loss of all kinds and I think most people here will be sympathetic. Hair loss comes in many forms and when it first starts it is really shocking and upsetting. I was diagnosed in 2012 with Frontal Fibrosing Alopecia and have lost a great deal of hair -about 2-3 inches from my hairline on my forehead, temples and around my ears. When I pull my hair back I look like I have a mohawk! There really doesn't seem to be any good treatment for this and I have to come to accept that this is way it is. I try to style my hair forward with bangs to hide the bald patches and when I'm outside I wear a hat or headband around the front to hide it. It really is a pain to have to deal with this, but at least the people here understand. I also am overweight which makes me self-concious and have also considered my hair one of my best assets. It was always thick and curly, and now it's much thinner and flatter. I've always really tried not to be a vain person and really don't spend alot on haircuts, expensive make-up or pedicures. I've mostly been a do-it-myself natural kind of person. But now I feel so paranoid that I need to check to see how my hair looks all the time and spent a lot on shampoos & conditioners, to try to make what I have left look better. I suggest finding a hairstylist you can trust and see if they can help you find a style that will hide the bad spots.
It is hard to come to terms with this condition but over time I've become more accepting. I know it's not life-threatening and there are a lot worse things that could happen to me. I know I have a good husband who loves me and 2 sons who keep me busy so I try not to worry about my hair as much. Hope this helps! Karen

• ▶ Reply

Permalink Reply by Sophie on June 23, 2013 at 3:18pm

Hi Karen,

Thank you so much for your support. Its very nice to hear your heart warming story and i completely understand what you mean when you say its not life threatening and that there are ways to deal with it. I dont have much money either. The only things i ever really spent money on is shampoo so i dont suppose that will change too much :) i am also a nail artist and i like to make them patterned and do designs so, much like lyndsey was saying i think this may be good for something to carry on making me feel special. I found another patch today at the back of my head and have noticed its thinning out a lot more so i have decided to just role with it. Listening to you and Lyndsey saying about headbands, scarves and hair pieces or wigs i have decided that when the time comes, im just going to embrace it as best i can and experiment. if anything, i will try and see it as a new way of re-styling myself like a makeover and it can be quite exciting to have a new style every day :) thank you for being so honest im what you wrote. Youre beautiful no matter what your size remember that :) xx

• ▶ Reply