Comment by Pat on June 14, 2011 at 9:57pm

Hi Autumn sounds like you've had your fair share of crap over the years and now alopecia to cap it off! I know all about the frustration of people giving their opinion and useless advice...it still irritates me at times but it used to make me feel like I'd brought my alopecia on myself! I also couldn't look at myself in the mirror without thinking I looked like a freak...I felt like a freak most of the time! The ones closest to me couldn't help me and they irritated me too! Keep blogging here, venting etc...most of us if not all of us have felt exactly the same as you at some point. We need to get all the crap out before we can start feeling better about ourselves. Getting used to our changed appearance takes a lot of time. I'm sorry you're having such a difficult time with everything else going on too...life just throws stuff in our face. I've been faced with all the other difficulties you've mentioned and it isn't easy to find a positive. Acceptance is the key, to accept yourself as you are and make the best of the situation.

Comment by Autumn Leaves on June 14, 2011 at 10:08pm

Thanks alot for replying :)... PFFT i dont think i will ever accept myself i didnt like myself to begin with. I hate the fact that i cant drift through life without being noticed because of my appearence. I wish i had the guts to accept it but i cant do it and thats what makes me feel even worse (if you know what i mean). And true my friends irritate me... especially my best friend who said that my hairloss makes her feel sick... I sway through accepting and being upset about it! And i agree i do feel like i have brought it apon myself in one way or another. Thanks for replying i didnt know if moaning would irritate people but i just had too try it :)

Comment by Pat on June 15, 2011 at 2:23am

Accepting that I have alopecia isn't about feeling okay with it...just means I can't do anything about it and once I accepted that fact I felt I had some choices...ie wig, scarf, or whatever even the bald look, whether to get permanent makeup etc. I chose to make getting a wig that I felt comfortable in and looked like my own hair my priority. That's what gets me through each day. It's got easier to look at myself in the mirror but I still hate having alopecia and probably always will. This has been over a 20 year journey for me and I was angry/sad/miserable/and extremely irritated for quite a few of those early years. Acceptance means I don't live with those feelings anymore...at least not about my alopecia :) Until you get to that place moan away...it does us good to get those feelings out to people who should understand because they've been there. I couldn't be honest to my family and tell them how I really felt because it upset them to know they couldn't fix it, so online support groups became my alopecia family who listened and didn't try to make me feel better but instead let me rant and rave and say how upset I was and never once told me I shouldn't feel that way because other people have worse in their lives...ugh...I hated it when people said that trying to make me see the positive. As far as I was concerned there was nothing positive about it and hey I still feel that way. And that's okay. I do the best I can with what I've got :) If I lost an arm or a leg I'd get a prosthesis. Is that covering up? I think it's making the best of bad situation. Same with hair. It's part of us that we've lost. We feel its loss and grieve its loss. It's all part of coming to terms with it same as any other part of our body. So bottom line: it's okay to feel lousy about it!!

Comment by Autumn Leaves on June 15, 2011 at 7:51pm

Thanks so much! wow having cancer and alopecia is bloody awful! I dont know how you coped.... And i suppose ive just got to wait for the moment of acceptance but i just dont feel i will get to that stage...
I am glad that i have found people that understand because people who havent experienced it cannot emphasize... Its difficult with family too because my mum has bi-polar and she isnt really 'there' most of the time and when she is shes stoned like me :) plus i hate her anyway and my mum said not to tell the rest of the family because they will look down at me... i cant help thinking its my fault in some way or another... The thing is even reading these messages makes me upset and tearful because it makes it real... The thing is too its my first time with alopecia so i dont know whether i will lose it all or if it will grow back which is making me freak out... I dont know how to conceal my hair either... at the moment im wearing hats which is a pain at at school because people commented and i had to show the teacher my hair so she would let me wear hats... i just wish i could brave it and chill but i dont think i can cope with people making comments... How do you all cope with it? ..AS for my friend she says it makes sick looking at it but she has always been like that... i remember the week i was first offically diagnosed with AA she had her hair cut and was complaining, she said with the amount of hair she cut off she could make a wig for someone with alopecia... i was quite upset but i dont think she meant it... I do have other friends but i am the one who supports them kind of person and i dont divulge family shit or any other with them but i thought i could make an exception with my closest friend pfft fail!

Comment by Pat on June 15, 2011 at 8:23pm

Remember most people who get aa don't go on to lose all their hair. The majority get spots which grow back and although that in itself is a pain in the neck for many it is better than losing all their hair - depending on how big the spots are of course! It's easy for me to say don't count your chickens before they're hatched but it's only natural that you worry about how it will progress. I'm sure all of us did!! Even though you can't talk to your friends/family remember we are here for you. I'm sorry your mum has bipolar disorder it is a dreadful thing...both my adult children have it...causes all sorts of problems for them and for me and my husband. I grieve for that too when I see other families without this problem but I suppose they have issues of different things. With what's going on it's no wonder you are the 'strong' one for family and friends!! There is a mental health group here on AW btw.

Comment by Autumn Leaves on June 15, 2011 at 8:53pm

I dont have one, I have four one is at the side, then the front, then two close together at the back but its massive i just couldnt be arsed taking a pictures but thanks i hope it doesnt all fall out :/ i think would freak out! Thanks yeah bi polar is a bitch my dad had it to and killed himself... And i have depression and ADHD which i blame the bad genetics of my spazzed family... I know exactly how it feels looking at other families but what doesnt kills us makes us stronger like for example if i have a family i wont be such a git like mine was to me... I shall check out the group thanks :)

Comment by Autumn Leaves on June 15, 2011 at 8:56pm

Ohh and Alice ive looked around for groups and theres nothing in England :( but tbh i dont like talking to people face to face it freaks me out and i get restless and meetings and all fidgety so i prefer this kind of support but thanks for the idea :)

Comment by Pat on June 15, 2011 at 9:28pm

Sorry to hear that, what difficulties you've faced for such a young person! Bloody genetics hey?!! I can totally relate to that!

Comment by Autumn Leaves on June 15, 2011 at 9:45pm

Yeah it is rather unlucky but i suppose a bit of depression and ADHD isnt half as bad as Bi polar my chances of not getting it where slim so its good... You said you had two children with Bi polar, where they diagnosed at a young age? I think its a horrible illness to get did u find it hard looking after them to?

Comment by Autumn Leaves on June 15, 2011 at 11:07pm

Stephanie,
Wow thankyou for that message that was really quite something to reflect upon... My first same is autumn but my second name isnt leaves i just thought it fits quiet well and thankyou for liking my name :) I am happy for you that you have found a positive way to cope with your alopecia... I am trying hard to accept it now... I mean i am more open about it but i still get upset and it hurts alot... I like helping other people that is what i want to do with my life and the helping kind of consoles me if you know what i mean... I dont know know if i have the strength to rise above it or at least not now.... You are right that is certainly a deep message but a comforting message all the same, thankyou x

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