Alopecia sucks :D: Hi all, I'm new here and I... - Changing Faces

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Alopecia sucks :D

endehors
endehors
10 Replies

Hi all, I'm new here and I don't really know how to start but... I'll give it a go. I'm a young woman experiencing alopecia, in my case it was diffuse thinning due to Hashimoto's and since a few months ago also a. areata very rapidly progressing towards totalis. My bad luck xD!

I've always been attached to my hair in terms of identity, I'm mixed and almost white-passing if you disregard the hair so my hair was a really big deal, my defining trait if you will. I'm sure it is for any girl, anyways. I've done my fair share of crying, asking "why me?" over and over again, envying other "normal people" and I feel it's time for me to pick up the pieces of my life and get constructive. I've lost my hair but I need not lose my entire life.

The catch is... I get stuck. Things seem to be going better, I shaved my head in order to get comfortable with what lies ahead, I am productive, I improve my sociability for a while and then something minor happens and I get kicked into this spiral of self-pity, depression and passivity. When that happens I just want to hide and sleep.

I struggle with mirrors. The reflection is someone - and it's not bad, or repulsive - but it isn't me yet.

I'm looking for advice. What helped you get back on track with your "normal" life? How can I make this transition into my new normal faster and smoother? How can I help ease the negative emotions that come periodically? I'm determined to stay positive as much as I can and help myself live a fulfilling life regardless.

Sorry that was so long and sorry about my bad punctuation, English is not my first language!

Thank you all xxxx

10 Replies
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Cosmicgirl

Hi endehors. First of all welcome. Alopecia must be very distressing but well done for coming on hear for support /advice. I know exactly how you feel as I have rosacea which leaves me with permanent redness,on my face and acne like spots as well as random flushing. I understand the mirror thing. It is hard to accept a physical change as you often feel like you don't recognise yourself, but you have to remember that just because you may look different, you are still the same person. I often find talking to other people on Instagram helps as it makes you realise how not alone you are. Is there a support page on there. There is a lady who works in the supermarket near me and she has alopecia. She wears a scarf over her head and is happily sat in the checkout serving customers. Anything dramatic always causes a shock at 1st. For me I am still struggling with my red face but everyday becomes a bit easier. Try and get yourself out even if it's just to a shop somewhere you feel safe. I often go to the supermarket cafe. It will make you feel better and you'll realise people really don't care. Shaving your head is a huge step and it sounds like you are on your way toward being at peace with this. Don't forget there are also really high standard realistic wigs you can buy now. It's all about baby steps. You can do it I'm sure. Good luck, and here if you need to talk. 😊

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OutdoorsyGal

I have a friend who lost her hair to cancer treatment and she has wigs, lots of them. She regards them as fun accessories instead of disguises for her hair loss. Her attitude is great. Maybe you can have wigs that accentuate both parts of your “mixedness”. And some that stroke the Gaga part of your ego, as well!

Good luck!

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AlwaysSmiling
AlwaysSmilingCommunity Ambassador

Hi endehors, welcome to this amazing community! I'm sorry to hear that things haven't been going too well for you.

Although you struggle with the fact that you've lost your hair I think that you are very brave and I'm glad you're determined to stay positive! Remember: staying positive isn't just about being happy all the time because this is difficult for everybody. Staying positive is about knowing that good times are ahead even if right now it seems that things couldn't get worse!

When it comes to living a "normal" life I'd say that it is important to surround yourself with people who make you happy and make you laugh, this really helps me whenever I feel down. Also, keep yourself busy because your mind is really good at overthinking things which often leads me to feel a bit sad.

Finally, here's a tip for the mirror and this is something that I do every morning and I think it is so important:

SMILE!😊

No matter what kind of day you're having it will lift your spirits at least for a little while!

Hope this helps, stay strong!❤

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endehors

Hi AlwaysSmiling! I'm taking your advice and yes, smiling does make a huge difference! If you can approach the most unfortunate things with a bit of humor it becomes a lot easier to cope for a while :D

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Gogo_go

Hi endehors!

Welcome to the group, and thanks for sharing your story. I can relate a lot to what you are feeling! Been going through this for 2 years so hopefully I can help a bit.

Your attitude seems really great and really positive! Positive thinking has definitely helped me. I have come to realize that being positive doesn’t mean always being happy. When those low feelings start to happen and it feels like too much, I like to take the time to let myself feel bad and cry things out. When I feel I have spent a good enough time letting all of my negative emotions out, I get up the next morning and start anew.

The mirror issues was a big thing for me. When I was in the hospital they wouldn’t even let me look in a mirror. But something that helped me a lot was sitting in front of the mirror and talking. I know it sounds weird but it made me feel more like myself. I guess hearing my voice come out of my “new” face made some type of connection. Then i started to play around with make up and try out new looks. Especially looks I was afraid to try before. It made the mirror fun again!

The biggest thing that helped me get back to normal life was acceptance of my situation. One day I thought “okay this is it. Time to move on” and I did. Embracing the new chapter made life a lot better.

Of course everyone’s situations are different, and people heal differently, but I hope this can help at least a little. Everything gets easier with time, you will get through this and come out stronger. Hope it all goes well for you and if you ever need to talk I am here <3

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endehors
endehors
in reply to Gogo_go

Thank you so much for the thoughtful reply. I'm sure time is the best healer and acceptance comes with it. Hope you're doing well now!

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DolaChangingFacesUK
DolaChangingFacesUKAdministrator

Hello endehors, it's good to have you here and to see that members of the community have rallied round to support you. They really are an amazing bunch of people here and I hope you find their advice helpful. It sounds like you're trying to find your "new normal" which is something that can take time. Some people attest to the value of practising positive self-affirmation especially in front of the mirror. Again, this is not a miracle cure, it's more like watering a seed everyday and then suddenly discovering your seed has sprouted. I wonder also, if you've considered accessing professional help such as counselling? This is one of the services we offer at Changing Faces here in London. If you're UK-based and would like to know more, do get in touch with our Support and Information Line on 0300 012 0275 or email support@changingfaces.org.uk.

Kind regards

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Littlebertha

Hi I went completely bald in my early 20s I’m now 52

I can completely relate to the way you feel. I have had this for 30 years now.I wore wigs for 28 of them, and although they can be helpful to make you feel more normal they don’t come without there own problems.I go bald or wear bandanas now though

When I first lost my hair there was no support group so I was totally on my own

I would recommend that you get in touch with alopecia U.K.

There is invaluable support on their website.Doctors and dermatologist on that great in lots of people’s experiences

If you are on Facebook there are support groups on there

Lots of other woman ,men and children with all different types and stages of Alopecia (thousands in fact) will be able to share their experiences and support you!

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endehors

Thank you littlebertha, I'm not in the UK but I will look Alopecia UK up anyways. I tried on some wigs and I really didn't like it, I felt a somehow "uncanny valley" effect and it honestly bothered me more than walking around bald. It's difficult, but I'm slowly getting used to it. Anyways, thank you for the reply!

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Littlebertha

Your welcome and you don’t have to live in the U.K. to access the site or the support group

Best of luck

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