I have had alopecia for 18 months and i am sick to death...

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I have had alopecia for 18 months and i am sick to death of the condition. I have been on the internet to find out information and have done the usual rounds both private and on the NHS and the bottom line is they can do nothing about it, when it is ready it will grow back. If anyone thinks they are alone, forget it. I am the third generation to get this condition, i have seen my mum spend thousands of pounds on treatments and in the end her hair grew back on its own after a period of three years. These are some of the things i am going through at the moment

(1)I have sat in work and the pain of alopecia is some times unbearable. I know what part of my hair is going to fall out next because it is like some one pouring acid on my head. This can last for up to two days. When the pain stops I know the hair will then fall out.

(2)I can not now be in a situation with large crowds just in case some one knocks my hair piece and I find it stressful.

(3)In the summer time I find it difficult because it is just like wearing a woolly hat and I am so hot all the time.

(4)I refuse to go out drinking/socialising with a large group as I am scared some-one will for a joke touch my hair piece.

(5) I never look into the mirror unless my head is covered up as it makes me feel so down and ugly as a person. I have told my husband to leave me as I am so ugly and not worth being with.

(6)I have tried to carry on as normal but it gets me really down and I do have bad days, the psychological effects is worse than the condition and unless you have had alopecia nobody will really understand.

(7) I have been treated as though i am an idiot at work, you know that woman in the corner withthe hair piece. I have infomed my boses that i may have a hair piece but i am not stupid and have taken it up with the union.

Unless you have had this condition i doubt if anyone can really understand what we fellow sufferers are going through. The bottom line is we are still decent intelligent human beings who do have feelings. When people have a laugh at my expence i just think 'Nobody knows whats round the corner for them', i didnt dream in a million years that i was going to get this. So chin up, best foot forward and live your life to the full, hair or no hair i am not going to let this or peoples comments stop me from doing what i want to do regardless of how hurtful people can be. Smile and the world smiles with you, cry and you cry alone!

[i:061d6f2f8c]This message was automatically imported from the original Patient Experience[/i:061d6f2f8c]

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  • Posted


    I was reading up on alopecia (thought it was about time since i've had it for 11 years and now 18). Not sure what drew me to reply to yours, I actually started laughing (hey I'm allowed as I have alopecia!) not because I thought it was funny but because the way you had written you comment sounded like me when I go off on one, you know what i mean one of those 'it's not fair why me' eposides.

    I know exactly what you mean, it's hard for people to understand what your going through unless you have it, atleast your mum can relate to you though, my parents expect me to be able to do everything, university, part time job and a shining social life all at the same time, when really I don't even want to leave the house sometimes.

    I know it's hard for you especially as you've got it when your older, especially when image plays a large part socially you know how it goes 'look good feel good'.

    I know it's easy to say but if you don't like your working envirnoment then f*#k it off, there is always a place better, and someone who will want you more. Sometimes change is the best thing. If you do decide to stay, then you should hold your head up high, no-one likes a moaner. You will soon find that people will respect you, how many women would be able to cope if they were in your situation? probably not many and they will soon realise that. Your upbeat nature will intrigue girls and hense, may want to be around you.

    You shouldn't act like alopecia is something to be upset or ashamed about, if you think like that then it will rub off on other people, you don't want people to feel sorry for you do you or act differently around you do you? If it helps then crack jokes like, 'hey atleast I can''t have bad hair days' or 'Im lucky I can have more sleep in the morning, don't have to get up and straighten my hair!' You'l just be more fun to be around in general and you will feel better, as surely moaning doesn't help.

    Hey sometimes wigs are the best! some of my friends wear them on a night out cos they look better than their own hair! haha, I take it as a compliment. You're just being paranoid, you can't even tell most of the time when people wear wigs. I do but people can't even tell, if I don't feel the need to tell people I wont simple as that. For example if someone tells me I have nice hair, I might just say thanks and laugh to myself! If you find a style that you like and SUITS you, it will make you much more confident, afterall to pull a wig of it's all about confidences.

    You wrote about not liking to be in crowds incase your wig gets knocked off, but you can get tape for those kind of worries, you should go to a good wig shop or shop on-line if it's easier. If you get a good quility one you shouldn't worry about it coming off (unless your vulnerable to drunken fights, only joking!) or whether or not it looks real.

    If you are out with the right people then they will have respect for you not to do things like touch your hair and being adults Im sure it's just you being paranoid. I went through school wearing a wig and nothing like that ever happened to me (actually I should regard myself lucky shouldn't I? the bullies should have loved me! haha) truth is, if people see that you are happy with who you are and your looks than they will find it pointless making comments.

    Next time when you look at your bald self in the mirror, smile. For some reason when I look at myself bald it makes me feel liberated, not sure why?! Think because after a hard days work (or partying) I just can't wait to get it off!

    I hope you didn't find my reply too annoying (I write too much aswell ha) cos I know your comment was on a rather low-beat key and here I come along telling you to cheer up. I know your thinking easier said than done, damn right it is but that's the way it goes. It's good to have a moan and groan but then it's good to go out and have a laugh. And in regards to your husband, he married you for who you are not just yo

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  • Posted

    Hi- your reply to this woman is inspriring, and has actually made me well up! After reading your upbeat comments, I took my hairpiece from its box for the first time, went to an interview (that went really well) and by-passed the need to use any of the well rehearsed comments I had made about why I was wearing a headscarf!

    Thanks very much indeed!:lol:

    [i:166fd02444]This message was automatically imported from the original Patient Experience[/i:166fd02444]

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  • Posted

    I have had had alopecia areata sinse i was 5 or 6. I just want to say that Shing is really lucky to never have been picked on by others because of her bald spots, and it is not fair to critize the woman as being paranoid. I have been made fun off by kids at school from elementary school all the way through highschool. People who don't understand can be insensitive jerks. I 've been made fun of by other girls for wearing a wig the first and only time i tried. I was already vulnerable trying it in front of people for the first time, but it was made unbearable by the loud remarks i recieved in the middle of class by other girls. It is also hard to believe that hair doesn't make you more beautiful when seeing commercials with numerous hair products stating the importance of a women's hair. Shing- you may be upbeat and positive, but coming from someone who is now in college and has been suffering from alopecia since she was in kindergarten, you are living in a dream world.

    [i:12e81d2d2a]This message was automatically imported from the original Patient Experience[/i:12e81d2d2a]

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  • Posted

    Dear Danielle,

    You sound so angry and rightly so it is really hard. I have suffered my whole life with alopicia now being 24, never having a full head of hair losing it all when I was 15; trust me I know how cruel children can be. It saddens me that them girls put you off wearing a wig. I will always remember my first day at school wearing a wig; I had so many questions had I had a miracle cure? Is it a wig? All I said was its my hair (was not lying from now on the wig was to take the place of my hair).

    Not sure how old you are but if you are still at school and have a really good girl friend maybe you should both go to school in wigs and maybe change them half way through the day try and make it fun for yourself. Should anyone says anything rude try and do what I did when a young boy tried to belittle me. Calmly in front of a teacher explain your condition to them and ask them how they would feel in your situation and ask them how they would like for you and all your friends to stand and point and shout rude comments at them. It’s really hard to do but you will gain respect from them. The thing is if bullies thing you will give in to their comments they will continue if you can bite the bullet and stand up to them and put on a brave face even if inside you are crying they will back down and maybe not stop but will not bother you so much cos you will no loner be an easy target.

    I know what you mean about the adds I turn over thinking cows! It is hard to believe but hair does not make the person I have had several boyfriends and not one of them has had a problem with my hair (of which I have none) I have more of a problem with it then they do. When people get to know you hair is very unimportant.

    Chin up hun.:wink:

    [i:31d9b948c0]This message was automatically imported from the original Patient Experience[/i:31d9b948c0]

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