Losing My Hair | Q&A

Hi everyone, my name is Jen Campbell. I’m
an author and a book reviewer. Today I’m not going to be talking about book
things, I’m going to be talking about alopecia. Quick disclaimer: I’m going to
be talking about my experience with alopecia, my thoughts and my
feelings. I can only speak for myself, I just hope that it’s helpful to anyone
out there who is looking to find more information on the subject, plus I’ve
recently been buying some hats and headscarves for the summer and so I had asked
on Instagram and Youtube if you had any questions about alopecia so every answer
that I give I’m going to wear a different head scarf I have bought recently, in
case you’re in the market for them and you’d like to pick them up. Everything I
wear I’ll also link in the description box down below. None of this is sponsored
or gifted, all of the stuff I’ve bought myself, none of the links are affiliate
links either. All of the hats that I’m going to be wearing and showing you
today are made specifically for people with alopecia, either because of a
condition that they have or because they’re going through chemo and that’s
really great because before I’ve tried to wear hats that are just regular hats
for everybody and that’s fine too if those work for you but because these are
made specifically for people with alopecia I find that they’re really soft
and the shape is it’s more comfortable and it suits what I’m going for….
I’m not explaining this very well — it suits me better I think because they’re
looser; a lot of other hats would be quite tight and uncomfortable. Anyway
I’ll talk about that more as we get into it. So I’m going to shove this on my head
and answer the first question. Okay, hat number one. Question number one is actually two questions in one
what is alopecia and why do you have it? Okay so broadly speaking alopecia is a
condition where you lose your hair. The reason that I have alopecia is because
that is linked to another condition that I have, a genetic condition that I was
born with called EEC syndrome which is Ectrodactyly Ectodermal Dysplasia
Clefting Syndrome. It’s a rare form of ectodermal
dysplasia which itself is rare and it’s a clefting syndrome which means I was
born with ectrodactyly and syndactyly which is where you have
missing fingers and also your bones and skin are fused together so I had lots of
operations where doctors essentially crafted hands for me, did lots of skin
grafts, pinned bones etc. It also affected my teeth, my jaw, my eyes, my kidneys, my skin
my hair, my nails lots of lots of lots of different things it’s very eclectic. Hat
number two, question number two: what kind of alopecia do you have and how long
have you had it for? So there are lots of different kinds of alopecia. I have a
kind of alopecia called scarring alopecia and I was told that only 3% of
all alopecia is scarring alopecia so if you have alopecia and it’s not the scarring kind that generally — not always but
generally — means that your hair will fall out but then it will grow back again
perhaps not immediately but at some point and then it’s also likely to fall
out again and for that to be a cycle. However, with scarring alopecia your hair
does not grow back again, so once it’s fallen out that’s it it’s gone, goodbye. I
have had it, I think, for the past three years; it’s hard to pinpoint when it
started because it wasn’t noticeable at first and for many of you it’s also not
going to have been noticeable on this channel either because it’s on the back of my
head, so I sometimes, actually quite often, will film videos where I’m not
covering my head with anything but I do have my hair down it’s just you can’t
see it because it’s on the back of my head. So I have had this kind of scarring
alopecia for as I said probably about three years and it is linked to an auto
immune disease. That is what they believe causes scarring alopecia and for me that
autoimmune issue is linked with EEC Syndrome. Scarring alopecia is where your
body thinks that your hair follicles are a bad thing, that they’re an illness and
they attack them like they would some kind of
disease and they kill the hair follicles and those hair follicles
have been replaced with a scar tissue so on the back of my head I now have
scarring tissue where the hair was and this is gradually spreading. I will
insert some pictures here so you can see what that looks like. There was a
point where a lot of hair was falling out when I was in the shower,
there was one at time when I got in the shower and lots of hair fell out or what
felt like loads of hair… I was just holding lots and that was really when I
realized that it was a problem and I went to go and talk to a doctor about it
and I was referred to the rare diseases clinic at St. Thomas’s and found out
that it was all part of the syndrome that I have and that there isn’t
anything that can be done about it. Question number three:
how long have you been wearing headscarves for? Do you wear them for warmth
or protection or because you don’t want people to see? So I’ve been wearing
headscarves for about a month but before that I was just wearing hats —
woolly hats — and getting very hot and flustered and
wearing them indoors and I’ve just been putting off trying to find an
alternative that were actually suited to having alopecia and I feel very silly
for putting that off for quite a long time. Even though it’s been developing
for three years, I have been able to cover it up mostly; the hair all over is
starting to thin out but the main big bald patches are on the back of my head
so for a while I’ve been able to hide that by putting my hair up in a ponytail
or in a bun and I can still do that just about
but the ponytail is now very very small and the bun is very very small because
there isn’t as much hair as they used to be. I used to have so much hair so much
hair and strangely EEC syndrome is linked with having really frizzy unruly
hair; it’s bright white when you’re young and now it’s turning to this
for me where I am losing it so it is this weird… this weird split but I’ll
insert some pictures here so you can see how much hair I used to have; it was
quite Hermione-like and so even though I have lost lots I still have a lot of
hair, too, because I had so much to begin with but yeah I’ve only been wearing
headscarves for the best part of a month but had been covering up a lot before
then anyway and I wear hats for all of the reasons that were in this question,
so I wear them for warmth in the winter and for protection in the summer that’s the most practical reason because
obviously the skin on your head is really sensitive and I wouldn’t want to
expose that to the sun without due protection so that’s the main practical
reason and then yes there is an element of me, part of my
brain that has bought these because I would like to cover up the baldness on
my head which I I am… it’s difficult… because at the same time I’m cross with
myself for that. I can’t control how people around me react and behave and
because people judge me quite a bit based on the way I look for other things
such as my missing fingers and misshapen hands I sometimes… there’s only so much
you can deal with it re, questions and people looking at you in a day, so,
yeah, part of me is wearing these so that I don’t have to deal with people looking
and is that… not problematic but not straightforward? Sure, but it’s not
because I’m ashamed of myself. This one makes me feel like a pirate.
Question number 5: why don’t you shave your head? They weren’t asking that in a “why
don’t you just do that?” sort of way; it was a genuine curiosity — have I
considered this, would I like to do it? And as I said in
the last point I still have quite a lot of hair and the way that scarring
alopecia works is that it normally, not always but often, burns out at some point
so I probably won’t lose all of my hair though I may lose say more than half in
which case it may make me feel better to say “screw this I’m
just going to get rid of all of it.” I’m just not at that stage yet
because I still have a lot of my hair left. And I can see why shaving all your
hair off might feel empowering if you had a different form of alopecia, one where
you knew the hair would grow back again or if you’re going through chemo and
you have so much other shit going on in your life and that is like a reclaiming
of body, I completely get that, but at the moment I’m not at that point where I
feel like it would be empowering for me. Also, I’ve been thinking about this
question and I think we have an issue…we have lots of issues in society …but we
have this issue to do with hair in society where we’re cool with people
having hair and we are generally speaking, though not all of us, cool with
people not having hair and being bald but we have a big problem with the
in between bit. Some people might think it gross or weird to have
hair but also have bald patches on your head, that that we
can’t marry those two things together that it has to be one or the other. So also part of me is trying to fight against that because I don’t think that
that kind of attitude is helpful. Another pirate hat. Next question: is what
reactions have you had to your hair loss? My family have been
quite upset about it but I think that’s a reflection on other health things I
have in my life. As I mentioned I have lots of other things going on and
one of those being that I could lose my eyesight and I’m being closely monitored
for the way that my corneal cells are behaving because with EEC there is a
chance that those can become destructive get replaced with a different kind of skin
cell, like the hair on my head, the cells become a scarred cell and you can’t see
through them so I think that because this is a new thing that’s happened
health-wise for me (and I can see this point of view because it’s something
that has bothered me and has made me think in this way, which is
irrational) that if that has started to happen then perhaps the progression with my sight loss is more likely to
happen faster. These two things aren’t linked,
apart from the sense that they’re both linked to having EEC, but I think that’s
why my family and people close to me are upset by it because it signifies just
something else and the potential for other health things to get worse. I
do think that some of my family are also upset about it because it’s out of their
control, it’s not something that they can help with. I mean, it’s out of my
control, too, but I can buy hats! I think, yeah, it’s a bit of an awkward
thing to talk about with people because people want to say the right thing and
it’s something that I would like to talk about more because it’s a new thing for me and I think when things in
you you do want to talk about them because you’re trying to figure it out
yourself. Reactions from people who I don’t
know: I as I said I don’t really go out with it on display, so I haven’t really
had too many reactions from people in the public. I’ve had a few where…. well, I’ve had a few …but it’s mostly covered so the reaction I get is to me wearing a
hat indoors which I have been doing for a very long time or now wearing
headscarves and then some people might be confused as to why I’m wearing those (in more formal settings),
and so in school visits sometimes you know kids will say to me: “Miss
Jen you’re not supposed to wear hats indoors!” and then I have to explain and
then they’re cool with it. So, yes, it can lead to some awkward/weird questions but once you get past that it’s fine. It’s certainly
less of an issue than my hands are. I am very used to fielding awkward
questions but I do find that I get more flustered answering questions about this because
it’s something that I am still getting used to, whereas I don’t mind talking about other body “issues” because I’ve had them since I was born
and I can comfortably talk about those things and I’m sure that in time I’ll be
able to talk about this (alopecia) with people that I don’t know in a much more casual way.
Next question is do you use any special products? I don’t have anything
specifically for alopecia. I’ve talked to my doctor about this
there are certain things that you could do like take steroid cream… or rather
use steroid cream but that wouldn’t really work for the condition
that I have so I don’t have anything that’s specifically for alopecia but I
do use things because I have alopecia so when I wash my hair I use this which is
the OGX coconut milk conditioner and shampoo because it’s really nourishing;
my hair is very dry anyway because of having EEC and then afterwards I use
argan oil and that nourishes my hair too and I can also rub this into my scalp
along with coconut oil You can use this for so many
different things; I use it to take my makeup off but also it can be handy to
rub into my scalp, the area where I have no hair, after washing my hair it’s just
a case of making sure that I just use a little bit and that it doesn’t go into
my hair as obviously it could make my hair greasy if I’m not washing it off
afterwards. So, it can be used to moisturize which is great and
then I haven’t used this yet and but if there are times I wanted to go
outside on our patio or whatever and wasn’t wearing a headscarf and I wanted
to make sure that the skin on my head was protected, I might use this which is
Karme Day Defence which is the SPF that I use on my face because I have very
sensitive skin and this is great for sensitive skin. I will link it in the
description box down below. OK, so next one, this one is slightly different, it’s
slightly smaller than the other hats that I’ve shown you and this one
actually is a hat, it’s not a snood shape like the others. This is made by person on Etsy it’s not lined which means that it is lighter as well
so I think that it might be better than the others if it was really hot outside.
Next question is thoughts on NAA, would you go to a conference? So that is the
National Alopecia Foundation and that I believe is based in America, I’m sure
there’s an equivalent in the UK. Would I go to a conference? There is actually the
NFed as well which is the National Federation of Ectodermal Dysplasia and
they have a conference every year, so for people who have Ectodermal Dysplasia (EEC is one of 150 different kinds of Ectodermal Dysplasia|), and I’ve
never been to one of their conferences they’re always in America and I just
don’t know if I would find that kind of thing helpful, at least at this point in
my life, only speaking for myself that kind of conference where people with a
certain condition can meet up and talk to each other is great if that’s the
kind of thing you want to do. I think that they’re particularly great for
parents who have a child with a syndrome that they don’t have themselves and they
want to talk to other parents whose children also spending so much time in
hospital and they can talk about all of those procedures, I just think for me as
someone who has had this syndrome for 32 years it’s not something that I feel the
need to go to but I have found it helpful to talk to other people with EEC
online before, where we can just pool information. It definitely
could be useful for other people but it’s not on my list of things to do.
We’re moving on to caps now. I quite like these. Now, I mentioned at the beginning
of this video that these hats were made for people with alopecia and maybe I
should have expanded on that a bit and I did say that the material is
light and soft which means that it doesn’t irritate your scalp but also it
means because these caps they come down really low and over your ears whereas
another caps would cut off about there, and so it
means it covers more area of your head which is really great. Ok, next question
was… okay someone said “my roommate just got alopecia and she’s quite upset about
it what can I do to help her?” and I think you just need to listen to her and to be
guided by her as to what you should be doing. If she wants to talk about a certain
subject just make sure that she knows that you’re willing to talk about that
with her. Just be just be a pal, be a friend; be there… that’s kind of the
only advice that I can give you. Next question is “has it affected your
confidence?” Yeah, yeah it has. Not every day or maybe every day but to
different degrees. Some days we feel that we can conquer the world, don’t we? And
those things don’t matter to us. Some days we let things get to us… actually,
that that’s like I’m blaming myself, and I don’t want to do that — some days are just not so great,
right? And we feel differently about whatever situation we happen to be in
and I do feel self-conscious about it if I’m wearing a headscarf indoors and I
can see that people are wondering why the hell I’m wearing what they might
consider to be a hat indoors (in formal situations) but they don’t ask me, so I don’t feel like I can
explain and then it would be okay. It’s kind of this… weird
territory that you find yourself in. Some days, not all too often, but some days I
get very upset about it and you know we all get pressured by wanting to look a
certain way and especially if it’s a new change in your body when you’re used to
seeing yourself in a certain way it can be really odd I think because it on the back of my head especially so it’s not something I see
all the time when I look in the mirror, when I’m confronted with it and see it
from a different angle — for instance in a changing room — I’ll insert a picture here, it can be really
alienating for myself because I think “I don’t look like that!” So it
just about coming to terms with the way you look and how you can look different to
how you expect to. So yeah some days I’m like
“I’m rocking a really cool hat” and some days I don’t feel as good. The next question …let’s put on a
different hat …oh these hats I’m not sure about I thought that they might be cute
but I’m I… I don’t really know… they’re also quite a bit tighter which means
that they’re not as comfortable but they’ve just… yeah I’m not really sure
about this bow. I think I might pass it on to somebody else. Anyway, let’s answer the question while
I’ve got this on my head: “are you losing hair on other parts of your body?”
so with some forms of alopecia it can mean that you lose hair everywhere.
That’s less likely to happen with scarring alopecia but if my eyelashes fell
out that would be really problematic for me because of the eye sight condition that
I have. So fingers crossed that that doesn’t happen. I’m taking this off
now. I’m really I’m not I’m not sure how I feel about it.
Next question was “what are your thoughts on wigs?” They’re really cool but
they’re not as cool as I thought they were going to be …quite literally.
I’ve purchased a couple of wigs and maybe it’s because I still have quite a
bit of hair but they are hot, they make your head so hot and they are itchy and
uncomfortable and for some reason I hadn’t really thought that they would be
those things with still having that much hair. I thought that having still
having some hair would make them more comfortable to wear
but it just makes them feel a bit more cumbersome to me.
So I think they’re great if you’re comfortable wearing them then go for it
because they’re awesome but I haven’t found a wig that would suit me. I
don’t feel the urge to buy more but I will do more research into that if and
when the time comes and I will watch lots of tutorials by drag queens; I’ve
been told that that is the best place to go to for advice. I mean always listen to
the drag queens, that is what RuPaul’s Drag Race has taught me; that’s where
I’ll go for YouTube tutorials further the line but right now, right now, I am
not delving into that particular area. There are a few more questions but my
battery is flashing at me and I feel like I’ve talked a lot so I’m going to
leave it here for now. If I didn’t answer your question you can leave it in the
comment section down below and I’ll answer it there. I hope that this video
is helpful or interesting or something. I feel like this is a topic is
quite new for me so I’m still learning how to talk about it and I’m not sure
that I can talk about it in a particularly articulate way but I’m not
sure that that’s important because I think… as we used to say in
math class “you need to show your working” so this is me showing my working,
talking through how I’m feeling at the moment and all of these things are
subject to change but this is how I’m feeling right now, what I’ve learned and
what I’m playing with. I’m going to go. If you have any thoughts I would love to
hear them. If you have any extra questions, even if you didn’t submit
questions last time, leave them in the comments section, I’ll speak with you
there. If you’d like to go find my other videos talking about bodily difference
and representation in the media I’ll link that playlist in the description
box and if you’re new please do subscribe, it would be lovely to have you
around. Normally I’m talking about books and lots of bookish things and the
history of fairy tales and all that. So I’ll be back with another kind of video
soon. I hope you’re having a great start of the week. Lots of bookish love. Bye! x

81 thoughts on “Losing My Hair | Q&A

  1. Hello folks! I hope you find this video helpful. If you have any further questions, please leave them in a comment and I'll answer them there. xx EDIT: A question that was asked a couple of times and that I forgot to answer was "Does it hurt?" Answer: Yes. Not all the time but some of the time. Scarring alopecia has flare ups and during those it feels like my scalp is burning. Most of the time though it's just a bit uncomfortable/irritating but manageable. That's also why I've found it so helpful to have headwear that is made with this in mind; loose fitting headscarves mean that discomfort is minimised 🙂 xx

  2. Great video! Thank you for sharing 😄 Also, the last scarf (bright green) was my favorite! 😀

  3. I love the Bow (thanks for the link!) And thank you for sharing – I have a few friends with alopecia and every case is so different. This was very helpful!

  4. Wow, such a brave video! You are an amazing person and i hope this helps raising awareness and support!! I hope you are doing well 💐

  5. For some reason I would love to know how you think about the Royals of the UK and/or about the UK still having Royals in general. Because I find their lifestyle so anachronistic and claustrophobic while still glamorous – like a dark fairy tale

  6. I’ve had thinning hair all over for 20+ years and it is a very hard thing for a woman, and of course for many men too. Hair and self esteem traditionally do seem to go together, even back to fairy tales we see this emphasis I feel. I hope the making of this video has helped you as much as your viewers and I think you are an extraordinary lady for talking about this as you did. You rock in a bookish way 💕

  7. When I had chemo I did not shave my head, but it fell in such speed that you cannot imagine. I remember I had it cut very short and the hairdresser brushing my hair and a bunch coming in the hairbrush. She then gave up and just cut it. It was traumatic, but I enjoyed my headscarves, and hats.

    You look gorgeous by the way.

  8. Thank you so much for talking openly and matter of factly. You're an absolute star.

    Also – 'always talk to drag queens' is going to be my mantra!

  9. I think people are less judgmental about wearing hats indoors in America. It’s really a pretty normal thing, especially where I live. People wear hats all the time indoors with no judgement. The high school I went to even allowed us to wear hats to school. Really glad you made this video, it has taught me a lot.

  10. Thank you Jen — great info and I'm happy you've found some comfortable styles for summer wear. You look great in most all of them– my fave is the one from Amazon that has the bill like a baseball cap. I'm ordering it in the peach color, even though I have enough hair at the moment to pile up in a bun. I do need to protect the scalp from summer sun on my walks🙏❤️

  11. Thanks for sharing Jen, I learnt so much from this video, and I love the beanie hats the best 😀 I don't know how the bow works, but can you wear it upside down or in a different angle? Maybe not a good idea 😂

  12. Do people not wear beanies inside in the UK? People do it ALL the time here and even in the summer so I don’t think here that would be an issue at all! Especially like a baseball cap, both men and women wear them all year round. Lots of guys basically wear a hat 24/7. I like the bow hat!

  13. Thanks for sharing your thoughts as well as your headscarves! I like that you talked about having good days and bad days. I think sometimes when we strongly know that beauty standards are bullshit and that it doesn't matter what we look like, we can put too much pressure on ourselves to always not care about other people's reactions. I lost all my hair last year from chemo (of course quite a different situation because it was temporary) and got frustrated at myself whenever I felt self conscious. I regret that now but I think my way of dealing with hair loss was to pretend I was super chill with it, even if I wasn't. I hope this makes sense. I enjoyed hearing your thoughts as always 🙂

  14. I’ve learned a lot from being a fully bald gal the last 17 years but even I don’t have my opinions and feelings about alopecia all figured out. I remember being 12 and watching the episode of friends where they all make fun of the bald girl, I remember being 18 and seeing the first Top Model contestant with alopecia. I’ve lived in Oregon where people are allowed to look different and I’ve lived in England and Hungary where I’ve gotten a lot of stares. I used to wear wigs (and yes they are unbearable) and now at 21 I am finally at a place in life and with myself where I can walk around in public with nothing on my head and feel comfortable in my skin and in others’ stares/questions. But man, being a bald teenage girl is not something I would wish on anyone in this society!

  15. First, the royal blue hat with the bow…you look adorable! Absolutely adorable. As far as getting used to the way one actually looks as opposed to how we think we look…I find that a definite issue at 72 I’m quite surprised when I look in the mirror and see a woman with wrinkled and sagging neck, face, skin and grey, thinning hair! I still feel…oh…about 40 inside. Time only compensates so much. I think you handle your issues with elan. Sending as many good vibes your way as possible.

  16. Hey Jen
    I just want to say hello and thank you for sharing so much and inspiring me and everyone who watches you.
    Hope you get better soon 🙂

  17. I just wanted to say that I love your full-body photos on Instagram. Um, not in a stalkery way, but I think your “look” is adorable and unique. I think your hats and caps etc look cute with your dungarees (is that what you call them??). I just wanted you to know that your style really fits with your personality and you seem confident and at ease — even if you really aren’t in the moment. I hope that this makes sense and comes across positive, as I totally mean it to be. I just wouldn’t think twice seeing you and Mr M headed toward me on a path or in a supermarket; I’d just think you were a cute young couple. Much bookish love from a Nana in California. 📚💞

  18. I really like the style of the blue one but without the bow. Maybe try a silk one in that style 🙂

  19. Thank you for this video, and for being so open with us. Have you considered silk scarves? Less bulky and perhaps a bit more flattering.

  20. Great video. I am always inspired by your confident, practical approach and willingness to share so much of yourself. Thank you! I really like the caps, and I agree with the other commenter who mentioned that in the U.S. no one bats an eye if you wear a cap indoors. Unless of course the national anthem is playing. 😉

  21. Thank you for sharing. Do to an accident some years ago I lost hair and find "Buff" to where. They are tighter but "Buff" was good in the winter:)

  22. As always, I learn so much from you, Jen. In the interest in researching options, I thought of a product you might want a snoop at. It's called a Crown Topper, from a company called Hidden Crown Hair Extensions (USA). I bought their halo style hair extensions a few years ago, and I can tell you the quality is superb- expensive (especially in $CAD), but superb. Anyhoo, I thought it would be cooler than a full wig. Perhaps there is a UK based company who does something similar… You look super cute is many of those headscarfs & hats 🙂

  23. Such a great video Jen, your hat (and dungaree!) collection is rad and I personally am a fan of the one with the bow 🙂 I met you at your book event in London (I was, by coincidence, the one with the shaved head) and I think you're wonderful. I don't have any bodily differences, but I am autistic and I still feel shy sometimes about wearing noise cancelling headphones in situations where one wouldn't normally, and am still working up the courage to try tinted glasses for my photosensitivity at work, so I can relate a lot to some of the things you were talking about today. Thank you x

  24. Great video Jen! Very informative and helpful. Thank you for sharing with us. Also those hats and scarves are so cute!

  25. One of my dearest friends has just been diagnosed with stage 3 breast cancer & will most likely be losing her hair due to chemotherapy. I want to support her in any way I can, but would you feel put off by someone sending you headscarves or would that be ok?

  26. You are an amazing individual who deserves the best of lives. Stay as positive as you always are. Peace, Love & Tofu

  27. Thank you so much for being so open and sharing your story with us all. You are a beautiful woman inside and out! I will lift you up in my prayers Jen 🙏😘

  28. Thank you for being so honest with us. You are a true inspiration. You are SO strong — Love Strong Women! You Are Adorable! Thank you for doing what you do! I am cheering for you! I have recently given you a “Shout Out” on my latest blog post, Living in the Moment. Hoping you do not mind the praise! https://kristinelivinginthemoment.blogspot.com/2019/05/meets.html?spref=fb&fbclid=IwAR2sY9zEip3T8EJvw7gXcoHv9aI5hMrwIttxkrGdK8GIpaRE47dmXIL9ndM

  29. Hi Jen, thank you so much for sharing your insights, feelings and knowledge here. Much appreciated and you, my dear, can certainly rock those hats and headscarves. Beautiful! xo

  30. Oh I quite like the bow one. It's something Lena Lovich would wear. You should check her out. I love her style and music! You are such a fantastic person! I wonder if you will/do incorporate this experience in your writing. All the best. Enjoy the sunshine :0) x

  31. Hi Jen! I also have an autoimmune disease, and I know exactly what you mean about the perhaps-not-100%-rational worry about some new symptoms might lead to other, scarier symptoms. Last summer I had a flare-up of my disease that officially took me from being on the 'mild to moderate' end of the scale to 'moderate to severe.' I spent the better part of a year being anxious over how my health might hold up in the future.

    When I was a child not very much was known about my disease, and doctors blamed it on "stress." Writer Maya Dusenbery says in her great book about women and illness, Doing Harm, that stress is like the modern equivalent of calling female patients "hysterical." Today, more is known about autoimmune diseases, including the fact that I did not give myself a disease by feeling stressed. I mention this because I love how much you talked about not blaming yourself. Self-forgiveness and giving your own little soul a hug every day is the best way to get through things. It's a constant exercise.

    Thank you for making this video. It's hugely informative to me, and of course I related to some things you said. <3

  32. I don't have alopecia but find your honesty and straight forwardness around talking about the condition inspiring. Lovely headscarfs, lovely human x

  33. This was a very thoughtful and insightful video. I particularly love the Burgundy 'pirate' headscarf!

  34. The color of the cap with the bow suits you. What if you put the bow on the side instead in the front? Would that work?

  35. You are very strong for getting this questions answered publicly, and doing a huge favor to anyone tired to explain themselves “Why I don’t have any hair”. You set an example for the rest of us, whereas we lack hair or not, have an hereditary syndrome or have any kind of disfigurement, we own our bodies and that does no harm to nobody. Let’s let live.

  36. But the blue bow was so cute on you! Anyone? Am I the only one who thinks it makes you look like a beautiful mysterious book writer glammed up?!

  37. https://www.youtube.com/watch?v=A-N2fVHSrsY&lc=z23ztjdb0kmeudptjacdp43bdne1ekoysmh1zj5nib1w03c010c.1557840619885990

    I don't know if you have seen this film. But it looks really good. And it's just a side note that Edie happened to have Alopecia. So strange that I came across it today. I really want to watch it as it seems my relationship with my mother seems scarily similar to Edie. But anyway you might like the film. It looks interesting to me.
    Take care :0)

  38. No suggestion of using a prescribed topical immune suppressant like they advertise on American TV for psoriasis? It would only prevent or delay additional loss.

  39. I have alopecia, and everyday is different. Some days I feel at peace with it and then other days when people notice and stare it kicks up my anxiety to a 10. I just want to say you are beautiful, strong and your ability to speak so eloquently and honestly made me feel seen and not judged. Thank you!

  40. Thank you Jen for sharing, it's so kind and generous of you. I hope you get nothing but positive energy back, because you're such a kind soul for opening up about things in your life that's tough. Have a great day, lots of love! ❤

  41. I usually do not respond much but this topic I just had to. I shave my head bald at least once a year. Then I let it grow back out, trying to fight back the mental issues that I have with hair. I was kidnapped, tortured and almost murdered and so along with all the mental illnesses I was plagued with, hating my hair was one of them. Another condition I have is PTSD with Agoraphobia and so leaving the house is a big No No for me BUT if I have to, I wear those beanies and it helps with feeling more secure. So back to the hats… I love the lighter fabric beanies you wore and have a few of them. Amazon is amazing by carrying so many styles and material. There are some with little cats on them that you should check out. They are really cute. So I then took it a bit further and learned to hand sew them and that just opened up the universe of different colors, styles, themed ones for holidays, light or heavier one for winter… The sky is the limit. I even like to wear them to bed! Oh and try wearing that blue bow hat with the bow on the side and not so much in the front. It may look better. HuggZ

  42. I love how you handled this, my hair is starting to thin (just normal Male pattern baldness) and I also get the statement sometimes 'why don't you just shave your head' I think people who don't suffer from hair loss don't realise how much of your identity is intertwined with your hair…

  43. Jen, you are rocking those headscarves. 🙂 It was really interesting to learn more about alopecia and I'm sure your video will be helpful for others as well.

  44. I'm not a fan of yours – or your channel – but watched this with a great deal of admiration. Hair loss is something that a lot of people will experience during their life time – whether post child birth, or due to stress, or other medical conditions. Fair play to you in trying to normalise this. I wish you well.

  45. When I was going through chemo I shaved my head cause it was annoying seeing chunks of my hair everywhere after my first chemo. It was the best decision for me. I didn’t realize how cold my scalp would get 😂 I think what made me more self conscious was when I lost my eyebrows and eyelashes. I love your attitude towards not shaving your head cause you still have lots of hair! I love all your hats btw 💕 after my hair grew back, I donated my hats cause I had like 30 😂

  46. This was really interesting and I think you managed to get your words across well! It's definitely hard to explain new health things to others when you're still trying to get to grips with it yourself, but I've found that it's often actually helped me figure things out by talking it through. With the scarring type you have, does that mean it's literally scar tissue that's coming through on your scalp? If so, is that more textured than the rest of your scalp and does that cause issues with discomfort or wearing the scarves? I'd never heard of this particular kind of alopecia before, but I guess that's not surprising if its only around 3% of alopecia occurrences!

  47. Someone's already recommended Wrapunzel, but I wanted to mention that there's also an amazingly diverse, accepting and supportive Facebook for women who wrap their head for all kinds of reasons: https://www.facebook.com/groups/wrapunzelcommunity/

  48. my main disability is a super-rare (10-15 worldwide, i was first diagnosed) form of ehlers danlos that causes easy bruising and tearing, but also a lot of excess skin, and looseness. Due to the skin stretching out over years i have a bald patch in addition to a whole lot of appearance-altering things—Actually, our rare disorders have a lot in common, they are visibly obvious with possible later complications that are more strenuous than they seem – and i totally wear hats if my hairstyle makes it obvious, mostly because honestly if I bothered to do something cute with my hair I don’t want people looking at that spot I want them looking at the cute.

    Similarly my arms (and legs but those cover more easily) been getting a lot of flaky skin as part of a cycle of raw/ooziness, dry flaking— and it’s totally caused me to wear long sleeve‘s in summer because I just don’t want to deal. Sometimes when you have a lot of things going on you just don’t want to face the reminder of them yourself constantly.

    on the other hand, I also get swelling in my joints, which is part of the reason for the itchy/oozy skin issues according to my dermatologist and that means that sometimes I have to wear my UGG boots for compression for a few days in the middle of July. Definitely not fashionable, but it’s what i have to do if i ever wanna wear my combat boots— which, actually are better for supporting my tricky ankle, go figure

  49. The pirate hats are a joy!
    Thank you so much for this straightforward and honest discussion, and for sharing this with everyone. Like a lot of the other commenters, when I was going through chemo I shaved my head. I tried a few wooly hats and a couple hats my family was lovely enough to buy for me, but I ended up stealing my boyfriend's slouchy, loose, stretched out hat for the entire thing. It was much more comfortable than a tight, hot hat.
    I also tried the wig life, but that ended up being too uncomfortable and hot, for me during chemo at least.
    While I know it might sound trite, I'm sending you all the good thoughts, prayers, and wishes.

  50. I am perfectly healthy human being but you are 2x beautiful then me and 5x smarter than me , so , would you like to go out on a date , I am 22 btw , I have a thing for poetsess 😉

  51. Hi Jen, I have EDD and Ectrodactyly and Scarring Alopecia. I have a question regarding sensitive skin. I've always been allergic to adhesives (bandaids, medical electrodes, wig adhesive etc.) and I have to be really careful what cleansers I use on my skin, but around the same time I got alopecia I also developed an intense sun sensitivity where I will get large bubbly welts on my face even in partial shade. It's at its worst when I'm exhausted or having an Alopecia flare-up. Have you noticed increased sun sensitivity and exhaustion with your Alopecia? P.S. I have that same blue hat only mine is green. I wear it backwards with the bow at the nape.

  52. You are so beautiful! I still haven't found courage to start wearing the wigs I bought for my hair loss, which are just hanging out creepily in my closet. I love your head scarves! They're such a great idea, and so cute! Thank you for your video series on this topic 🙂

  53. Love what you said about society not being okay with the "in between". It applies to so many things but I had never considered it in regards to hair. Lovely video, you look great in the scarves and I hope they keep you comfy!

  54. I really loved the bow hat, I hope you kept it! You can totally rock it if you want to!😘😘

  55. Good day Jen. I heard you mentioned that once the hair falls out…no hair regrows… but that it simply not true. Unless fibrous tissue has deposited where the follicle was then the hair will regrow if treated. Havent you received steroid injections..I am not sure of the type of scarring alopecia you have…but it mostly has to do with inflammation in the hair follicles and steroid s disrupts the mechanism that produces the inflammatory molecules. Granted. I love your positivity! Take care..oh I have CCCA.

  56. You are an amazingly strong woman. Wow. I'm just blown away and inspired by your honesty and your spirits. Many blessings to you. Such an inspiration!

  57. A YouTube channel called dreamflight6000 has a whole playlist dedicated to her Hair loss and she also does some excellent reviews of ' hair toppers' which work with your original hair and are not a full wig. You rock those scarves ❤️

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