All Discussions Tagged 'love' - Alopecia World2024-03-29T06:46:54Zhttps://alopeciaworld.com/forum/topic/listForTag?tag=love&feed=yes&xn_auth=noWhat is it like living with Alopecia?tag:alopeciaworld.com,2020-03-25:2022678:Topic:17379842020-03-25T02:55:31.290ZGabehttps://alopeciaworld.com/profile/Cheltenham
<p>I own the lifestyle brand <a href="https://www.cheltenhamave.com/about" rel="noopener" target="_blank">Cheltenham Ave</a> centered around living well with alopecia. (Titled after the street I lived on when I was diagnosed.) One of the most popular questions I see is "What is it like living with alopecia". If anyone is interested please reply to this post and I will use your reply in the blog post I'm creating. Think Buzzfeed style - with your reply and an image or gif.</p>
<p>If you'd like…</p>
<p>I own the lifestyle brand <a href="https://www.cheltenhamave.com/about" target="_blank" rel="noopener">Cheltenham Ave</a> centered around living well with alopecia. (Titled after the street I lived on when I was diagnosed.) One of the most popular questions I see is "What is it like living with alopecia". If anyone is interested please reply to this post and I will use your reply in the blog post I'm creating. Think Buzzfeed style - with your reply and an image or gif.</p>
<p>If you'd like to be a part of changing the narrative from "suffering with" alopecia to "living well with" alopecia reply with:</p>
<p></p>
<p>1. Your answer to the question " what is it like living with alopecia?" </p>
<p>2. Current Age</p>
<p>3. Type of alopecia you have </p>
<p>4. First name </p>
<p>5. optional: social media handle (Twitter, Instagram, blog site, etc.) </p>
<p></p>
<p><strong>Example: Living with alopecia has been a journey of self-love and finding the perfect lightweight beanie. - Gabe, (26) Alopecia Areata, <a href="https://www.instagram.com/beanie_og/" target="_blank" rel="noopener">@beanie_og</a></strong></p>
<p><strong>Example: Living with alopecia is a 0 min morning hair routine.</strong></p>
<p><strong> </strong></p>
<p>Thank you!</p>
<p>(By replying to this you're allowing me permission to post.)</p> Dating problems, rejection insecurity, where I go again!tag:alopeciaworld.com,2017-07-01:2022678:Topic:13818802017-07-01T18:59:43.778ZPhotolichttps://alopeciaworld.com/profile/Photolic
<p><span class="font-size-2">Hello, everyone, my name is Jorge am currently 31 years old Portuguese guy living in Melbourne Australia. </span></p>
<p><span class="font-size-2">I have alopecia universalis since I can remember, the patches started when I was 8 years old and involved to AU when I was about 15 I guess. I don't remember myself with hair, to be honest. Its 3 am here in Melbourne 3 degrees Celsius outside and it's the first time in posting something here besides some photos a long…</span></p>
<p><span class="font-size-2">Hello, everyone, my name is Jorge am currently 31 years old Portuguese guy living in Melbourne Australia. </span></p>
<p><span class="font-size-2">I have alopecia universalis since I can remember, the patches started when I was 8 years old and involved to AU when I was about 15 I guess. I don't remember myself with hair, to be honest. Its 3 am here in Melbourne 3 degrees Celsius outside and it's the first time in posting something here besides some photos a long time ago.</span></p>
<p><span class="font-size-2"> I would like to say that I never felt excluded and I always had an amazing group of friends that never let me down. Saying things like "you are one of a kind", "you look great its or trademark image", "you should be more confident with a woman they like you". You know the kind of things your true friends say but deep inside me, I know they were just being amazing and trying to give me some self-esteem boost. And I do thank them for that! </span></p>
<p><span class="font-size-2">I always was a funny guy the one with confidence and the guy that makes everyone else laugh all the time. Now that I think about it, at the start it was the way that I found to break the ice and interact with everyone and make them laugh instead of focusing on my alopecia, they were too entertained to thing about hair!!!. </span></p>
<p><span class="font-size-2">I though I was confident enough to don't care about AU, I even helped some people with AU giving them kind of motivational speech, cause at the time I was being successful in my professional life and imagine in my love life too! Can you imagine I had the most beautiful and hot girlfriend for 5 years, and she approached me (i never approach a girl first, to scare of rejection) crazy I know!! A beautiful girl how the hell that happened! </span></p>
<p><span class="font-size-2">So basically all fall apart after she broke up with me 5 years later. And all of the daemons of AU come back to me, all the insecurity, fear and sadness, anger, asking why me... crying alone. Yeah, men do cry sometimes!</span></p>
<p><span class="font-size-2">Basically, I was depressed 1 year at home, without even realizing that I was in some kind of depression! Me the one who makes everyone laugh, the guy that help the others all the time and the guy that says the life is a wonderful present! It couldn't be possible I should be the last person in the world to be depressed. </span></p>
<p><span class="font-size-2">Anyway and don't want to write my memories yet so I'm gonna resume. </span></p>
<p><span class="font-size-2">I know I had to change my life so I left country, family and my friends and came to Australia to start a new life. </span></p>
<p><span class="font-size-2">And here Alopecia strikes again, and here it hurts the most, being rejected from the woman. I feel that here more than ever. When I go to one bar or a club and I'm dancing I just see how fast I'm rejected, I have the impression they look at me like an alien sometimes. Sorry to be so raw with the words.</span></p>
<p><span class="font-size-2">Maybe I need to work on my self-esteem again, but for me having a girl was my way to say "In your face Alopecia". It's stupid but makes me feel good, makes me feel desired and accepted, normal in some away, starting with alopecia with 8 years is too much of a burden sometimes.</span></p>
<p><span class="font-size-2">Sorry for the long and nonsense post maybe. It was a good opportunity to train my English anyway, my writing skills are not good yet. I'm much better in Portuguese! </span></p>
<p><span class="font-size-2">I would like to know how you deal with this dating thing? Any suggestion?!! how do you approach opposite sex?</span></p>
<p><span class="font-size-2">ps: The thing that upsets me more is not having eyebrows</span></p>
<p>pps<span class="font-size-2">: Thank yours for your time I felt better after throwing some words here.</span></p>
<p></p>
<p><span class="font-size-2">Sincerely,</span></p>
<p><span class="font-size-2">Jorge</span></p> Wedding stress promoting losstag:alopeciaworld.com,2014-09-10:2022678:Topic:12136742014-09-10T02:19:02.962ZLChttps://alopeciaworld.com/profile/LC449
<p>Well, my boyfriend of almost seven years asked me to marry him!!!! Unfortunately, it didn't take long for the wedding stress to set in. We realized we can't afford anywhere near our ideal wedding, and now we're trying to create something amazing on a (very) low budget. Since we've begun planning our wedding, I've noticed a lot of hair loss. My original bald spot has regrowth that doesn't seem to be reversing. My loss doesn't seem to be from a specific location, and I think that scares me…</p>
<p>Well, my boyfriend of almost seven years asked me to marry him!!!! Unfortunately, it didn't take long for the wedding stress to set in. We realized we can't afford anywhere near our ideal wedding, and now we're trying to create something amazing on a (very) low budget. Since we've begun planning our wedding, I've noticed a lot of hair loss. My original bald spot has regrowth that doesn't seem to be reversing. My loss doesn't seem to be from a specific location, and I think that scares me more! Plus, my scalp itches SO bad. I've heard about the link between stress and alopecia, and I couldn't believe it more! I don't want to be a bald bride! </p>
<p>Has stress caused a change in your alopecia?</p> The 'Third Date Rule' by Debbi Fullertag:alopeciaworld.com,2013-06-24:2022678:Topic:10626312013-06-24T04:34:44.350ZCheryl, Co-founderhttps://alopeciaworld.com/profile/cherylcarvery
<p><a href="http://storage.ning.com/topology/rest/1.0/file/get/2059818808?profile=RESIZE_320x320" target="_self"><img alt="Debbi Fuller" class="align-right" height="184" src="http://storage.ning.com/topology/rest/1.0/file/get/2059818808?profile=RESIZE_320x320" width="184"></img></a> For those of you who are dating and don’t know how to broach the subject of your alopecia with a new person, this is my best advice: <em>You tell them on the third date, without fail!</em></p>
<p>When you go on a first date with someone, you’re just checking them out and seeing if they are worth getting to know. You definitely should not be…</p>
<p><a width="184" height="184" href="http://storage.ning.com/topology/rest/1.0/file/get/2059818808?profile=RESIZE_320x320" target="_self"><img width="184" height="184" src="http://storage.ning.com/topology/rest/1.0/file/get/2059818808?profile=RESIZE_320x320" class="align-right" alt="Debbi Fuller"/></a>For those of you who are dating and don’t know how to broach the subject of your alopecia with a new person, this is my best advice: <em>You tell them on the third date, without fail!</em></p>
<p>When you go on a first date with someone, you’re just checking them out and seeing if they are worth getting to know. You definitely should not be getting so close that they need to know about your hair – right?</p>
<p>On the second date you are evaluating them for possible future relationship material. Ask all the right questions; find out if they are good to their Moms, etc.</p>
<p>If you both like each other enough to go on to that all-important third date, then it’s time to tell them about your alopecia.</p>
<p>For one thing, you don’t want them to put their hand on the back of your neck and be surprised that there’s an edge there, but, most importantly, if you wait longer, the alopecia becomes the elephant in the room.</p>
<p>You know that you have to bring it up, but the longer you leave it, the more difficult it is to do. If you let it go until you’re really involved and the person can’t handle it, you feel devastated and miserable because you let yourself get close to someone who, in my opinion, is unworthy of you in the first place. Now you need a shrink to get over the experience!</p>
<p>Don’t do that!</p>
<p>Tell them on the third date. That way, even if you get rejected, the most it takes to get over it is a glass of wine or two! At this stage, you can say to yourself, “Well, I’m sure glad I found out now that this person is so shallow that they can’t see me for the wonderful person I am.”</p>
<p>Anyone worthy of your love and affection needs to be able to cut the mustard. Anyone who would not want to date you just because you have alopecia will disappear at the first sign of trouble on any front. What would happen if you got seriously ill with, say, breast cancer, and had to have a mastectomy? He’d be out the door. You want someone who will truly love you for who you are and won’t judge you if you gain a couple of pounds, wear glasses, have spider veins, a sagging butt, or alopecia!</p>
<p>The best people are the ones who see the real you, the person who is funny, caring, strong, hard-working – all those great qualities that you have!</p>
<p>As to how to broach the subject, don’t make a big deal about it.</p>
<p>Say something like “By the way, before we go out again, I need to tell you that I wear a wig because I have a condition called alopecia areata. Have you ever heard of it?”</p>
<p>If they say yes, then get into a discussion of how and why and find out how much they know. If they say no, then tell them about it.</p>
<p>Tell them that you are totally healthy; that it is an autoimmune condition that only affects your hair; that one out of every 100 people will get the little round patches during their lifetimes; that you are just one of the lucky ones that got totalis!</p>
<p>Be funny; make sure that you don’t make it a big serious thing.</p>
<p>You’ll be able to tell by the way the discussion goes if the person can handle it or not. If they can’t, no big deal; there are plenty of better fish in the sea. If they say “No problem, your hair looks great!” then make another date!</p>
<p>Finally, if you decide to continue seeing each other, don’t wait long before the ‘unveiling’. Anyone that you continue to see will want you to be comfortable enough to take your hair off in front of them. You want to be yourself, hair or no hair.</p>
<p>I know people who have been married and had children who never let their families see them without hair. This makes your life very complicated and stressful when it doesn’t have to be.</p>
<p>You can wear your hair when you want to, and take it off when you don’t! Everyone just adapts to it and, after a while, they won’t even notice if you have hair on or not!</p>
<p>My husband never even notices when I change from long hair to short! He volunteers me to take off my vacuum to show strangers my tattoos! That’s the kind of love and acceptance you deserve.</p>
<p>Don’t live your life in fear of people finding out. Take the bull by the horns and show them! They’ll think you are great and, if they don’t, you don’t need them in your life.</p>
<p>You are worth it!<br/> __________________________</p>
<p><em>* Reprinted with permission from <a href="http://www.alopeciaworld.com/profile/debbifuller" target="_blank">Debbi Fuller.</a></em></p> Locks of Love Expose in Forbes Magazinetag:alopeciaworld.com,2013-06-20:2022678:Topic:10618522013-06-20T14:06:14.978Zkastababyhttps://alopeciaworld.com/profile/YoKasta
This was a story that broke in Forbes Magazine in May regarding Locks of Love. Many of us know someone or may have been personally been affected by cancer, alopecia, side effects of chemotherapy, or other forms of medical hair loss. Many of us may have also cut your hair or supported someone who cut their hair specifically for Locks of Love, Pantene Beautiful Lengths, St. Baldrick’s, or a similar charity whose purpose is to create hair prosthetics (wigs) for these patients. While I personally…
This was a story that broke in Forbes Magazine in May regarding Locks of Love. Many of us know someone or may have been personally been affected by cancer, alopecia, side effects of chemotherapy, or other forms of medical hair loss. Many of us may have also cut your hair or supported someone who cut their hair specifically for Locks of Love, Pantene Beautiful Lengths, St. Baldrick’s, or a similar charity whose purpose is to create hair prosthetics (wigs) for these patients. While I personally choose not to wear a hairpiece, I fully and passionately support others in a similar situation who choose to do so.<br />
<br />
Please read the article, and pass it along to anyone you know that participates in these activities. I personally try to do a thorough investigation on all of the not-for profit groups I choose to support, and support the ones who use all – or at least 90% - of the proceeds they raise for the cause they support. As someone who has lived with alopecia for 30 years, seeing how one NFP uses my specific condition as the catalyst for soliciting donations and then failing to account for 97% of the donations it receives is not only infuriating, it is upsetting and stressful to say the least.<br />
<br />
I hope you find the article useful. I believe that knowledge is power – and if we all do our due diligence, we can truly effect change – and waste, abuse, and betrayal of the public’s trust for such a sensitive issue can be minimized, if not eliminated.<br />
<br />
The article can be found here:<br />
<br />
<a href="http://www.forbes.com/sites/quora/2013/05/13/locks-of-love-6-million-of-hair-donations-unaccounted-for-each-year/">http://www.forbes.com/sites/quora/2013/05/13/locks-of-love-6-million-of-hair-donations-unaccounted-for-each-year/</a> Teenage love, why not me?tag:alopeciaworld.com,2012-06-22:2022678:Topic:9381012012-06-22T10:33:53.019ZHaileyhttps://alopeciaworld.com/profile/HaileyTrilk
<p>Hi everyone,</p>
<p>My name is Hailey and to be honest, I'm hurting. Am hurting, I've been hurting, for a while now. My mom suggested I try reaching out to those who are in the same situation as me, so here it goes.</p>
<p>I've been diagnosed with alopecia universalis for six years now. Lost all my hair when I was 10 and am now 16. I've helped a lot of my firends with their boyfriend issues--fixing them up,helping them get over the heartbreak, etc.--but have never been in a relationship of…</p>
<p>Hi everyone,</p>
<p>My name is Hailey and to be honest, I'm hurting. Am hurting, I've been hurting, for a while now. My mom suggested I try reaching out to those who are in the same situation as me, so here it goes.</p>
<p>I've been diagnosed with alopecia universalis for six years now. Lost all my hair when I was 10 and am now 16. I've helped a lot of my firends with their boyfriend issues--fixing them up,helping them get over the heartbreak, etc.--but have never been in a relationship of my own. This shocks a lot of my friends because they say that I have a golden personality and that any guy would be lucky to have me.</p>
<p>Well, that's great except the guys haven't really figured that out yet. I watch and listen to my friends time after time divulge to me how much they love their boyfriend/girlfriend and sure it is really cute at first but I can't help but think why I can't have some of that to myself.</p>
<p>I understand that it's teenage love, I do, but I just want my first kiss. And I beat myself up about this all the time because I can't help but think that I don't have a boyfriend and haven't been kissed because I don't have any hair. I feel so ugly all the time, no matter how many times my mom tells my I'm beautiful. She means well in every sense humanly possible but sometimes nothing seems to cheer me up.</p>
<p>Anyway, I don't mean to bore you all anymore I just wanted to express this to people who would understand so when I came across this website I figured, why not. If you have any advice or anything that could help me with this distress please please don't be afraid to let me have it. Thank you to all who read.</p>
<p>Sincerely,</p>
<p>Hailey</p> Nyah Nyah ;ptag:alopeciaworld.com,2011-01-04:2022678:Topic:5302472011-01-04T02:31:07.338ZTallgirlhttps://alopeciaworld.com/profile/Tallgirl
For those who just don't WANT to discuss the heck out of this most days, and are ready to just get CRAZY, have fun, dance, party, laugh, etc.....I raise a glass of New Year's Bubbly to you! Who the L needs the judgment, the guessing about who really loves/will love ya, the family's wringing-of-hands, the whispers in the corners? EMBRACE BOLDNESS, ye Bravehearts! Time to crank up that car radio and belt out songs all the way home on the commute, pour the wine at home, and be grateful the holiday…
For those who just don't WANT to discuss the heck out of this most days, and are ready to just get CRAZY, have fun, dance, party, laugh, etc.....I raise a glass of New Year's Bubbly to you! Who the L needs the judgment, the guessing about who really loves/will love ya, the family's wringing-of-hands, the whispers in the corners? EMBRACE BOLDNESS, ye Bravehearts! Time to crank up that car radio and belt out songs all the way home on the commute, pour the wine at home, and be grateful the holiday stress is over. NEXT ADVENTURE, COMIN' RIGHT UP!!!! I am ready to do whatever it takes to forget I even have anything "wrong"...and to save my energy for those who want my smile and zaniness. Think of the HOURS spent whining that can be spent laughing, accomplishing, traveling, talking. YEA!!!! LAST YEAR IS OVER, and new attitudes are at hand! You are still YOU! I AM STILL ME! The only people who don't get it are the ones who never take time to know you, and vice versa, RIGHT??? THEIR LOSS! How do I show him...and tell his family?tag:alopeciaworld.com,2010-10-26:2022678:Topic:5040682010-10-26T05:27:13.066Ztiny_ionehttps://alopeciaworld.com/profile/IoneFisher
Hi all, I'm 20 and I've got AA. :) I've had it off and since I was 8, this time around it's really aggressive and I've lost a majority of my hair, I've worn 2 wig(s) since April this year.<br />
I met my boyfriend in March of this year at church - so he hasn't known me in the period between my own hair and developing alopecia. In July, much to his confusion, I went from having a dark brunette bob one Sunday (a synthetic wig) to having light brunette mid length hair the next (a human hair wig)! He…
Hi all, I'm 20 and I've got AA. :) I've had it off and since I was 8, this time around it's really aggressive and I've lost a majority of my hair, I've worn 2 wig(s) since April this year.<br />
I met my boyfriend in March of this year at church - so he hasn't known me in the period between my own hair and developing alopecia. In July, much to his confusion, I went from having a dark brunette bob one Sunday (a synthetic wig) to having light brunette mid length hair the next (a human hair wig)! He approached me about it, somewhat puzzled, and asked if I'd had really short hair the week before? I hesitantly said yes, but that that was as much of an answer as he was going to get for a while, which he was ok with. When he told me how he felt about me in August I explained everything to him, and despite saying I'd understand if he didn't want to pursue anything further we started dating :)! I've since met his family, who I adore. Based on reports from him, the feeling is mutual :)<br />
Although he knows all about it, I haven't actually shown him my head without my wig, and we haven't told his family about it, which I think is important to do sometime. It's not that I don't want to or that I'm overly anxious about it, I’m just aware that it could be a pretty big moment for not only exposing vulnerabilities, but a great chance to build up honesty and trust between us! …I'm just unsure how to approach it!<br />
<br />
So, I'm wondering if anyone has had a similar experience, or is in the same situation, and can offer some advice? For example, does anyone know of any good medical websites that I can direct him and his family (if/when I tell them) that explains everything fully? And, when/how did people show their partners their heads without a wig? Did you make a time, or did it just happen? What sort of reaction did it garner?<br />
<br />
So glad to be able to chat and vent to people who are in the same boat!<br />
:) xoxo Must your love interest 'see' your alopecia?tag:alopeciaworld.com,2010-09-02:2022678:Topic:4840822010-09-02T20:42:45.209Zrj, Co-founderhttps://alopeciaworld.com/profile/rj
My alopecic and adorable wife doesn't wear wigs or any other head covering. Nevertheless, sometimes I wonder how I might have reacted if she hadn't allowed me to actually see her alopecia until months after I started dating her. What if she had concealed her alopecia only to reveal it to me after we fell in love -- or simply after I became accustomed to seeing her with a wig on?<br />
<br />
Would it have made a difference? I really don't think so, but this I know for sure: It's one thing to know that…
My alopecic and adorable wife doesn't wear wigs or any other head covering. Nevertheless, sometimes I wonder how I might have reacted if she hadn't allowed me to actually see her alopecia until months after I started dating her. What if she had concealed her alopecia only to reveal it to me after we fell in love -- or simply after I became accustomed to seeing her with a wig on?<br />
<br />
Would it have made a difference? I really don't think so, but this I know for sure: It's one thing to know that someone has alopecia and quite another to know what they actually look like with the condition.<br />
<br />
Given the importance of looks in the context of most amorous relationships, how important might it be for an alopecian to show their condition to someone with whom their developing a serious relationship? How risky might it be for an alopecian to simply tell a love interest about their condition and only unveil it after the relationship is quite serious? Indeed, is this a general problem area for single, or even married, alopecians that you know?<br />
<br />
Some time ago, someone rightly pointed out that it's not appropriate to reveal such personal matters to just anyone. Therefore, I need to emphasize that this is NOT the issue I'm raising with this discussion.<br />
<br />
Rather, I'm here interested in knowing your thoughts on the following issue alone: Does there come a time in a developing (or existing) relationship when it will no longer suffice for a love interest to merely know that their partner has alopecia but not know what the person actually looks like with the condition? Is it possible for an alopecian to keep this "secret" too long in such a relationship? I confess: I like it when men like what they see!tag:alopeciaworld.com,2010-08-12:2022678:Topic:4726192010-08-12T19:17:27.708Zrj, Co-founderhttps://alopeciaworld.com/profile/rj
<p><a href="http://www.alopeciaworld.net/photo/photo/slideshow?albumId=2022678:Album:1552" target="_blank"><img alt="Cheryl Carvery-Jones - Click for slideshow" hspace="5" src="http://storage.ning.com/topology/rest/1.0/file/get/2059818965?profile=original" style="float:right;" vspace="2 border="></img></a> I take silent pleasure in seeing that <a href="http://www.alopeciaworld.net/profile/cherylcarvery" target="_blank">my alopecic and adorable wife</a> is pleasing to the eyes of <i>other</i> men. However, I never lose sight of the fact that she chose to grant me very special and exclusive privileges for several reasons, not the least of which is my authentic acceptance of her…</p>
<p><a href="http://www.alopeciaworld.net/photo/photo/slideshow?albumId=2022678:Album:1552" target="_blank"><img style="float:right;" alt="Cheryl Carvery-Jones - Click for slideshow" src="http://storage.ning.com/topology/rest/1.0/file/get/2059818965?profile=original" hspace="5" vspace="2 border="/></a>I take silent pleasure in seeing that <a href="http://www.alopeciaworld.net/profile/cherylcarvery" target="_blank">my alopecic and adorable wife</a> is pleasing to the eyes of <i>other</i> men. However, I never lose sight of the fact that she chose to grant me very special and exclusive privileges for several reasons, not the least of which is my authentic acceptance of her alopecia seven days a week, 24 hours a day.<br/> <br/>
There is not a moment when I want her to cover her head or, more to the point, hide her alopecia areata. I have always proudly accompanied her to business meetings, church services, family gatherings and other social functions, parks, stores, restaurants, vacation destinations, and even to our respective workplaces.<br/>
<br/>
Moreover, I never make an apology or some preemptive announcement regarding her patchy hair loss or baldness simply because she is my better half and not some blotch on my public image.<br/>
<br/>
There is nothing -- and I mean nothing -- "abnormal" about her that I need to explain or justify. As she made crystal clear on her MySpace page when we met three years ago, her appearance is <i>au naturel</i>. Thus, natural is precisely the way she and I act, and it is the way we expect others to react.<br/>
<br/>
Indeed, these are some of the things that distinguish my love from the mere lust of others. My burning desire <i>for</i> her has never been reducible to some fetish-like fascination <i>with</i> her. She is the phenomenal woman of my dreams not only because of what she looks like, bald or otherwise, but also because of what she is like.<br/>
<br/>
I may be pleased without words when others notice her, but I'm definitely pleased beyond words that she noticed me.<br/>
<br/>
rj, Co-founder<br/>
Alopecia World</p>