alopecia

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    The Autumn Of My Years

    Frank Sinatra famously sang in “It Was A Very Good Year”—a survey of his life of sorts—observing that it was a very good year when he was 17, and again at 21, and 35. Later the days grow short and he finds himself in the autumn of his years. Frank doesn’t share with us what age he is, but it’s 2022 and I’m 42, and I feel that I have reached the autumn of my life.

    I am rooted in my bed. I can stretch my limbs as far as downstairs maybe once, twice, a day. I manage to water myself about twice a week, but even then, my trunk groans and creeks with the effort. Most things that I enjoyed when I it was in the summer of my life, have lost their lustre. And like the autumn tree, I have begun to shed my hair.

    My branches held onto my leaves as long as possible. For that I cannot fault them. The rings of decay from the physical—and emotional—stress that were forming unseen inside me just become too many, and without my awareness. I saw countless doctors, all of whom failed to identify the rot that had set in, declaring me a mystery with my inverse T-waves, shaking limbs, falling leaves, and general failure to thrive. Finally, after two emergency room visits, a hospital stay (2 out of 5 stars, do not recommend), I finally saw an endocrinologist after a two month wait. He was confident that I had most likely gone from a state of hypothyroidism to hyperthyroidism without knowing it, for at least a year. With all the stress this imbalance of hormones placed upon my body, my hair started to break and then fall out.

    So now I am in the literal autumn of my years.

    The forecast is hopeful in that with the right treatment, most of my hair will grow back. And, after having weathered an unrelenting storm for the better part of the past year, my body just wants to hibernate. I am grateful that we are approaching winter, which makes sleeping all day feel like less of an indulgence. But I think about my hair loss and how for the past two months I have been lost for the right words to talk about it… particularly in the absence of a diagnosis.

    There are things I can tell you though.

    I can tell you that even though I couldn’t walk, developed alarming peripheral neuropathy, and needed a wheelchair, the thought of losing my hair scared me more. Despite developing what the doctors repeatedly referred to as “concerning” cardiac symptoms, my concern remained with the loss of my hair and with each parting strand, a part of my identity felt at risk. I can tell you that after being admitted to hospital for observation, I became even more afraid when my body hair started to fall out. Making each trip to the bathroom into a turbulent storm of anxiety, grief, and depression, as my body continued to shed more leaves.

    This being a major outward sign of my condition, every day of increased hair loss made me feel like I was ever closer to being visited by the famed hooded logger, and thrust into the great wood chipper. And no Friends like Pheobe, Monica, and Joey to save me.

    As I fixated on my hair loss, I learned many things.

    I learned that there are all sorts of potions that you can buy, that promise to help regrow hair. There are wigs… so many wigs. But the choice really only comes down to two questions. “Can I pull off this radical new look?” Or, “if I cut this wig in a certain way, will it make me look like I did before?” Thyroid related hair loss apparently means any hair that does grow back, might not be the same colour as before. So that’s kind of like a present to look forward to, only it’s unlikely to arrive by Christmas. A full head of medium length hair apparently takes two, maybe three years to regrow. In that respect at least, I feel like I will be like a sapling again, with literal tufts of juvenile hair sprouting between what remains of my established leaves and locks.

    I can tell you that in addition to the emotional pain, hair loss hurts, quite literally. It hurts to pull on it, and my hair band falls out often—I just don’t have enough to bunch together anymore. So I’ve invested in cancer hats. Only I don’t have cancer, so I also feel like an invading alien species. And of course derogatory as the term is, it is accepted that cancer patients are “brave”. The only thing worse than this enforced bravery is that there is no accepted lexicon, or field guide for what I am.

    But I can tell you how I feel.

    I feel like the lonely tree in a forest that doesn’t look like, or feel like, I belong with the others. I’m not quite sick enough to be offered any support to help prop me up, even though every day is a struggle just to hold myself upright. Being my kind of sick is to be that lonely tree in a field that people are happy to shelter under in a storm, but quick enough to cut down at the first sign of disease.

    And I do not know when it will be spring again.

    But I hope that when that day finally arrives I will rush out into the wilderness and hug every tree I see. Even more so in winter—for I will know what it is like to be bare, and suffer from a lack of kindness or care.

    #HairLoss #Hypothyroidism #Hyperthyroidism #GravesDisease #Grief #Loss #Depression #Loneliness #ChronicIllness #Alopecia #MyCondition #Anxiety #Stress #MentalHealth #MightyTogether #SpoonieProblems #Selftalk #Selfimage #Selfesteem #PeripheralNeuropathy #Neuropathy #WritingThroughIt #Disability #Homebound #ChronicFatigueSyndrome #Spoonie #Hope

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    I feel so lost… 😔

    It’s been a while since I posted anything, not because I haven’t missed you all (because I have), but because I have had so many thoughts racing around my mind that I didn’t know where to begin. I feel like I’m lost in the midst of all the stress and chaos that is swirling around in my head. I’m actually so stressed that I have developed ‘Telegon Effevium’ - stress related alopecia - which is, ironically, also stressing me out. 🤦🏻‍♀️💔 I feel like I have so much going on in my head that I have lost the person I used to be, and I really don’t like the person that it’s turning me into. I want to re-discover the ‘me’ that I like being, the ‘me’ that I used to be before my life was turned upside down (which I will post more about later). The problem is, I just don’t know where to begin… 😔🥺💔
    #CheckInWithMe #CheerMeOn #MightyTogether #MentalHealth #Anxiety #Depression #Disability #FunctionalNeurologicalDisorder #FND #ChronicIllness #ChronicPain #Grief #SpoonieProblems #TelegonEffevium #HairLoss #Alopecia #LostInTheChaos #JointHypermobilitySyndrome #JHS

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    I Am Worthy Because I Have Alopecia.

    I am worthy because I have alopecia. Alopecia causes me to lose a lot of hair from my head very quickly. I am worthy because alopecia is not who I am. It’s a condition I have.

    Alopecia defines me as much as the color of your house’s roof defines you. In short, it doesn’t. Alopecia is a condition which is surprisingly common, but is treated with a tremendous amount of internalised and externalised gender bias.

    Androgenic alopecia is normalised, but feminine alopecia is not. A man can walk into an office without a strand of hair on his head, but if a woman were to do the same, she would be faced with questions and comments. Why the double standards and hypocrisy?

    I’ve found that in many, many cases of gender bias towards alopecia, the woman is usually a target of questions about her health. Whereas a man is usually accepted for having alopecia, regardless of the severity, despite there being an almost equal impact of it on men as it does on women physically.

    The worst part of the gender bias is the normalisation of the consequences of alopecia, and the demonisation of the consequences of alopecia for men and women respectively. Men are told that they can still have careers, relationships and active lifestyles despite their symptoms or the severity of their alopecia. Women are made to believe that their ability to seek a career, build relationships and have an active lifestyle is restricted because of their alopecia.

    In understanding the gender bias between men and women, we begin to see where the roots of the stigma of alopecia truly come from. It’s hardly the condition itself which is creating such a struggle for sufferers, but the biased and often misogynistic myths surrounding it, which generate far more distress than the symptoms themselves at times.

    This is why I choose myself and my worth over a false narrative. I am worthy despite my alopecia and because of it, because I am not deserving of any contempt for having alopecia symptoms. If anything, it is a sign that alopecia itself is something that our society needs to work on either accepting or curing completely, instead of condemning persons with symptoms.

    I am worthy and I have alopecia. I am building the highway towards authentic self worth and self empowerment. #AlopeciaAreata #Alopecia #PostchemotherapyAlopecia

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    Anyone else dealing with premature baldness?

    It's been having a pretty big impact on my mental health for some time now, and the other day I shaved my head since I figure the stress caused by trying to hide it ain't gonna get any better, but maybe I can come to terms with this eventually.

    As a side note, my formerly glorious hair was a pretty huge part of my identity. I don't look quite as terrible as I expected with a shaved head, but still. It's not ideal.
    #Selfimage #HairLoss #Anxiety #Alopecia

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    Alopecia? #Fibromyalgia #Alopecia

    I was diagnosed with fibro about 5 years ago. I've recently noticed that I'm getting some alopecia. I have lost patches of hair from the tops of my forearms (I have always had a lot of super dark body hair, so this is noticeable), more recently on my shins, and I have also noticed that my eye brow hairs seem to be coming out more than one would think and are getting thin.

    Curious to see if anyone else has had this symptom with their conditions? I don't take any medications.

    I've learned so much from this group. I know fibro isn't the end of my story. I've been tested for the following:

    HLA B24 - positive
    ANA - Negative
    Fibro - Positive
    Lyme - Negative
    Sjogren's - Negative
    RA - Negative
    AS - Negative (but only had x-rays)
    Vitamin B - 5 (supplements for that)
    Thyroid - Low normal
    Hormones - Low normal
    Iron - Low normal

    I know there's more, but I can't think of them at the moment.

    Thanks in advance!

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    YOU ARE GOOD ENOUGH!

    Our conditions tempt us to look down on ourselves. Don’t fall into that trap, it’s hard to escape. YOU ARE GOOD ENOUGH. We may be down, but we are not out. Remember that broken crayons still colour.

    #youaregoodenough #Selfesteem #Selflove #MentalIllness #MentalHealth #Depression #Anxiety #SocialAnxiety #ChronicIllness #Fibromyalgia #encouragement #PhoneAnxiety #alone #Loneliness #AlopeciaAreata #Alopecia #Confidenceneeded #Brokencrayonsstillcolour

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    #Alopecia #AlopeciaAreata

    Can I just be honest? Truly honest? It's getting harder to hold onto the hope that I will ever get my hair back to the way I want it to be. I'm tired of it being all weird and strongly, and crazy, and of control. It's so tiring to put on a wig when you really all you want is just your hair, it sucks when u come home and the realization hits you that you are wearing a wig... it hurts so much. I'm getting exhausted and ready to give up on it all. The medications, the treatments, the procedures, the blood work, I'm getting tired. All I want is one thing! Why does my body choose to attack itself? Of course I wouldn't change myself but it just gets so mentally & emotionally exhausting. I don't even feel beautiful, when I don't wear my wig, the only time I do is when my mom is playing with my curls or when I look at my dad and realize hey I have some little curls I'm like him. But other than that, I feel like I don't even know who I am, I feel like I look not like a girl anymore, and I hide myself, I hide myself from photos without my hair on at times because I feel so ashamed, depressed, lonely, & broken. It hurts to know that you might not even get ur hair back. How do I know that the hair I have right now won't fall out the next day? Sure, I still have some falling out. Of course some pieces are longer/shorter than others but I don't want to cut my hair, I have anxiety, and I get extremely panicked if I do cut it, I'm afraid I won't get it back by the progress I have made. Every single day is a struggle of when will I feel beautiful again, when will I have those days where I feel beautiful again once in awhile. I'm tired of the silent tears & the ones I don't shed. I know I was chosen for a reason, but why does it have to be so heartbreaking & so difficult? I know people will say "it's just hair, it's not like your dying, it's not like you have cancer you don't go through what they have to go through" but I am dying, my hair is like a death, it's like losing part of my identity & myself, it's like losing yourself and not knowing who you are anymore, I know people have it worse, but it doesn't make me feel any better it only makes me feel worse. The treatments, the medicines, those are exhausting, try getting 4cc of so many shots all over ur head, bleeding, & feeling that light head mess, try walking out of the doctor's room wig people staring at you as they take photos of your head, it's terrifying. Try having poison ivy reaction medicine, & checking in with the doctor every so often, & you acting like everything is fine when there is no cure for your disease. It's so tiring. I try my best to be positive and not talk about my autoimmune so much because I know there are worse cases outside of mine, but that doesn't mean I can't make people aware of my disease, because I am helping people. But sometimes it's just so tremendously difficult to keep positive about the situation when people don't know the torments inside your head and the exhaustion it pu

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    #Alopecia #AlopeciaAreata “A Strand”


    It started with a strand,
    a silky, stringy, beautiful strand
    Swooshed away with running current of the sink
    And you go on...
    Then came a couple few more strands,
    beautiful, luscious, silky strands
    disconnected but poured down the drain once again
    A few days later a large clump of matted hair fell into the sink
    those once beautiful strands of hair are all gone now, and now you are left with nothing but strands here and there... And you walk away from the mirror... knowing that those too will be gone soon.

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    #AlopeciaAreata #Alopecia “Nobody Understands”

    Nobody understands the battle inside me. Nobody understands how it feels to lose you hair, they can try as hard as they can but they will never know the times you refused to look in the mirror, tired of seeing all your hair go down the drain. Nobody understands how you could cry endlessly & be angry, and so emotional. They say it could be worse, but that doesn't make you feel any better, it makes you feel worse. You are tired of going outside, you don't want people to stare without your wig or cap on. Because all you want is your hair back. Nobody knows how many times you've cried in your bed at night, and waking up early so tired to even move. Nobody understands that you feel a lone, sure you may have so many people supporting you, but you just want to talk to someone who understands your own individual pain. Nobody understands how you look around at camp/practice and everyone around you is braiding each other's hair, but... You don't have any to braid... You adore others hair more because you miss your own. Everyone around you says "well at least you're not dying." But they don't know that you are dying, just not the kind you can see on the outside. It seems people only care that as long as your drying or dead, you then cry about your life that's coming to an end. But everyone who encounters you says "it's just hair." But to you, it's a part of you, it's a piece of you, it's dying, you're dying with every strand that falls on the cold, wet, sink. But they'll still say "I understand." But truly you don't. You don't understand. You don't understand me. You don't understand my illnesses & you'll never understand the pain I go through each day.