May 27, 2024 • 36 mins
#105. What's it like to suddenly start losing your hair at the age of 22? How open should you be about it when start dating?
This is The Silent Why, a podcast on a mission to open up conversations around grief, to see if hope can be found in 101 different types of loss.
Loss #53 of 101: Loss of hair through alopecia
Meet Laura Burns, a social worker for an anti modern-slavery charity, but also a friend of ours who lives in The Black Country. Laura married our friend Jonathon in 2022, and we had the privilege of being at their wedding.
This is only our second in-person interview, after nearly 200 podcast episodes! So it was very exciting to chat face-to-face with Laura in our podcast studio.
Alopecia first appeared in Laura’s life in 2011 when she was 22 years old. Alopecia areata is a disease that happens when the immune system attacks hair follicles and causes hair loss, and Laura explains the different types and which ones have affected her over the years.
Both Laura and Jonathon have had more than their fair share of health conditions. Jonathon was born with renal failure and later had a kidney transplant, and Laura has had brain surgery more than once. But it was only recently Laura told us she has alopecia, so we asked if she'd come and tell us about her experience, and she agreed. This was the first time we were hearing her story, so it was a real honour to record it for the podcast to share with you.
Laura talks about what kind of loss alopecia is, the journey to finding the right wig (pop over to our social media to see how gorgeous that is!), how she found the right man 😉, and how it's not always been easy to know what to share with others and when.
She also shares some of the more humorous moments, e.g. when her now-husband Jonathon first saw her without her wig - well worth tuning in for.
This is a very honest conversation about a very visual and complicated loss, especially because identity can be so closely connected to our hair. Laura shows us how hope can find a way in and how important gratitude has been to her.
For more information and support with alopecia: https://www.alopecia.org.uk/
PLUS: Tune in next week for a bonus material episode, because after this interview we recorded a chat with her lovely husband, Jonathon Burns.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Laura (00:02):
Hi, I'm Laura. And I'm here to talk about hair loss
through alopecia.
Claire (00:08):
Welcome to The Silent Why a podcast journey to see if
hope can exist in 101 differenttypes of loss and to hear from
those who have experienced them.
I'm Claire Sandys. And this ismy husband, Chris.
Chris (00:18):
And in this episode, we're chatting to a friend of
ours in-person. That's not hername!
Claire (00:23):
Yes, it's only the second time we've recorded
anything in person. So this is avery lovely change for us.
Chris (00:29):
In an unusual twist this episode comes with a bonus.
Claire (00:32):
Bum bum baaaarm.
Chris (00:33):
You'll have to wait till the end of the episode to find
out what that is.
Claire (00:37):
Anyway, back to Laura Burns, who is a social worker
for an anti modern slaverycharity, and she lives in the
Black Country. Chris, what isthe Black Country?
Chris (00:46):
Thanks. It's in the West Midlands of England. It was
actually one of the birthplacesof the Industrial Revolution,
sometimes referred to as thearea where the coal seam comes
to the surface. So basically,high levels of certain air
pollution led to it being calledthe Black Country back in the
1800s.
Claire (01:04):
And what is the coal seam?
Chris (01:07):
Gee, thanks, onwards.
Claire (01:10):
Always good to throw a bit of history in there, even
though it has nothing to do withour guest. But that's where she
lives at the moment.
Chris (01:15):
Laura started dating a friend of a friend of ours, the
lovely Jon, and we've got toknow them as a couple over the
last few years and then had theprivilege of being at their
wedding in 2022.
Claire (01:25):
And this couple have had more than their fair share
of health complications fromJonn being born with renal
failure and later having akidney transplant. And Laura
having had brain surgery morethan once in the last few years.
But it was only recently that wealso found out that Laura has
alopecia. Her wig is amazing.
And we hadn't realised this wassomething else that she was
dealing with. So as she's such afriendly, open person, we asked
her if she'd be willing to comeand chat to us on the podcast
(01:47):
about what it's like to loseyour hair. And she said, Yes.
Chris (01:52):
It was nearly 15 years ago, when alopecia first entered
Laura's life when she was in herearly 20s.
Laura (01:57):
Shortly after all the hair on my body fell out. So it
was quite a sudden thing. Ididn't really know what was
happening. So it was quite ashock. And quite scary at the
time, because it's such avisible condition.
Claire (02:11):
Laura told us about the journey she's been on as she
found her way with alopecia, butalso how it's not always been
easy to know what to share, andwhen, with others.
Laura (02:18):
When I actually transitioned to decide, I'm
going to start wearing a wig. Ithen felt like the wig was very
obvious. And so I felt a duty totell everybody I met. So it was
quite strange, really. But Ialways felt like oh, I'll try
and get this into a conversationwhen they probably weren't
really thinking about that. ButI assumed it was the elephant in
the room.
Chris (02:37):
She also shares some of the more humorous moments, one
of which is when husband Johnsaw her without her wig for the
first time.
Laura (02:43):
And we were sitting on the sofa one day, and he just
moved his elbow in oneparticular way...
Chris (02:49):
You'll have to keep listening to hear the end of
that story.
Claire (02:52):
This is a very honest conversation about what can be
very visual and a verycomplicated loss, especially
because identity is so closelyconnected with our hair quite
often. But Laura shows us howhope can find a way in and how
important gratitude has been toher.
Chris (03:05):
So let's get into it. We started the chat by asking Laura
to tell us a bit about herself,then what an average week looks
like for her.
Laura (03:15):
Hi, I'm Laura. I am currently living in the Black
Country in the West Midlands,with my husband, Jonathan. And
I'm a social worker with a antimodern slavery charity. So I
work with survivors of modernslavery to help them to get the
right legal advice and supportto be able to move forward with
(03:36):
their lives. So yeah, my worktakes up quite a lot of my week.
And then outside of work, I likemeeting up with friends for
coffee, walking to a min. Andyeah, every week looks quite
different. Really.
Chris (03:47):
Thank you. I mean, we're delighted that you've agreed to
chat to us on the podcast and inperson as well. It's great to be
here, which is brilliant.
Because this is only the secondtime that we in how many 150 odd
episodes that we've done, thatwe've actually been able to
speak to somebody in person,which is lovely, and makes a big
difference. So thank you forthat. And you're not done this
before. So we're really, reallygrateful. You're willing to come
(04:09):
and chat to us thinking
Claire (04:12):
yeah, and we know you like not just as a guest, but we
know you as a friend as well.
Laura is actually the friend ofa friend who are both called
Jon, lots of Jon's in ourconnections. So we've known you
for a while, it's safe to saythat you've both had your fair
share of health complicationsalong the way. But you very
kindly come to chat to us aboutsomething that you went through
in your 20s which wasdiscovering that you had
(04:32):
alopecia. So why don't you tellus a bit about what alopecia is
and how you found out that youhad it.
Laura (04:38):
So alopecia is a autoimmune condition. And your
immune system is there toprotect you against infections
and diseases. But sometimes yourimmune system can sort of attack
itself and in the case ofalopecia, the immune system
attacks the hair follicles,which then causes the hair to
fall out. So There's differenttypes of alopecia. The first
(05:02):
type being alopecia areata,where you'd get patches of hair
that falls out. And then there'salopecia totalis, which is where
you lose all hair of your head.
And then alopecia universalis,which is where you lose all hair
from your whole body. Soincluding sort of eyelashes,
eyebrows. So yeah, those aresort of the main types of
alopecia. For me, it happenedreally quite suddenly. So I do
(05:25):
have some other like autoimmuneconditions that eczema and
asthma and so apparently I nowknow, that alopecia can sort of
you know, is within that familyand can also happen, just
returned from six months ofbackpacking. And so being in
lots of different countries,sort of, you know, all different
environments, where you mightthink if you're going to have
(05:45):
something like sudden hair lossthat might happen there.
However, that wasn't the case,it was, as soon as I got back,
after about a month, my hairfell out within the space of two
weeks. So quite suddenly, I was22 at the time, so like, quite
young. And initially, it was thehair on my head that came out.
And then shortly after all thehair on my body fell out. So it
(06:07):
was quite a sudden thing. Ididn't really know what was
happening. So it was quite ashock. And quite scary at the
time, because it's such avisible condition. And then
thinking sort of what do you doin that moment, initially, like
think I had a lot of questionsand just was trying to appear as
normal as possible by usingdifferent hairstyles and trying
(06:30):
to sort of cover up as much aspossible. But that was quite a
short lived thing, because itjust was falling out so quickly.
Claire (06:38):
And especially that age as well, it carries such a big
deal when you're younger. And Ithink we can forget that as we
get older, sometimes how big itis, you know, you get a bad
haircut when you're young, andit feels like the end of your
world. So there's a lot going onthere. What were the emotions
that you were kind of goingthrough when that was happening?
Laura (06:52):
I think, probably a lot of fear about why this was
happening. And when would itcome back? And I think maybe
don't really think about it, butlike part of your identity is in
your hair, especially as yousay, as like someone in their
20s. So I just always had longblonde hair. And that was just
part of me. And so then it feltlike just losing a part of
(07:14):
yourself. And that kind of fearthat people would then see you
differently, or treat youdifferently. So yeah, just a lot
of kind of, I guess fear anduncertainty. Were probably the
main feelings at that time.
Chris (07:27):
Can I pick up on what you say about that initial thoughts
around when it will come backover whatever space of time it
may have been? Did you alwaysthink when? Or was there a point
where you had to put f into thatas well?
Laura (07:38):
Yeah, I think initially, because it did come out so
quickly. I just assumed it wouldprobably go back so quickly. And
no, that might seem like astrange sort of way of
rationalising. But yeah, I justkind of assumed it will be a
short term thing at the time.
And then I did go to see adermatologist. And they said,
there's no real sort ofmedication or cure, and it's
(07:59):
very different for each person.
And it may come back it may not.
So I think then that made mesort of question Oh, what if?
Actually, I'm one of the peoplewhere it my head doesn't return?
And what will life look likethere? So I think that probably
changed my perspective of sortof assuming it would come back
when I had that appointment.
Claire (08:19):
It's a tricky loss, because it's, it's a physical
loss. And we spoke to somebodyrecently who lost their arm. And
there's no hiding that, youknow, you see someone with one
arm, you have to either talkabout it or ignore it, it's very
obvious. But with this one,there are ways to sort of hide
it. And like you said, you'retrying to do different things.
So it's a difficult one, becauseyou must have to decide who you
tell. And when you tell what ifyou tell anybody. And you must
be wondering, are peoplewondering about this? So how did
(08:42):
you go about talking to othersabout it? Or did you not really
talk about it?
Laura (08:45):
I think when my hair first fell out, I did talk about
it quite a lot, because I wastrying these different styles.
And I almost felt like I neededto explain why I was doing so
many different things. And thenwhen I actually transitioned to
decide, I'm going to startwearing a wig because there's
not really anything left and theneed to sort of accept this. I
(09:07):
then felt like the wig was veryobvious. And so I felt a duty to
tell everybody I met. So it wasquite strange, really. But I
always felt like oh, I'll tryand get this into a conversation
when they probably weren'treally thinking about that. But
I assumed it was the elephant inthe room that I needed to just
sort of let people know about.
So that was early on. And thenas the years have gone by, it's
(09:28):
become more normal to me, Iguess. It's not something that I
think of at the forefront of mymind when I'm meeting new
people. And I don't assume thatpeople think about it or need to
know in the same way so it's nowonly really if it comes up in
conversation that I would sortof talk about it with new
people.
Claire (09:48):
So did it feel quite lonely at that time because I
know we've spoken to you andyou've said since then you've
discovered there are nowpodcasts about it. Obviously
there's social media, how did itfeel sort of pre all that
happening?
Laura (09:58):
Yes, it did feel quite Like not sure sort of where
exactly to turn initially. Soonce you've had the diagnosis,
there isn't really well, there'skind of some treatment that you
can try. But you're not reallyunder a, an NHS service for sort
of like the emotional side of,you know, support. And so I did
(10:18):
find that one charity that wasaround at the time, I remember
was alopecia UK. And there werelocal support groups. So I went
along to one of those. And theywere really great because it was
other people who had had similarexperiences to me. And they did
not just talk about things, butthey also brought someone in to
do like Indian Head Massage, orreflexology, or just sort of
(10:40):
some tips on how to draweyebrows. And so it was quite
practical as well. So yeah, thatwas like, quite helpful. And
then I was just sitting next tosomeone in my office at the
time, who had previously hadalopecia, which was quite
unusual, because I've actuallynever come across anyone, since
who kind of in regular, like dayto day life that that has it. So
(11:02):
yeah, that was really helpful tohave that lady at that time. But
with the sort of advancements ofsocial media, there are a lot
more podcasts nowadays is likeInstagram reels. There's a
platform for regular people toshare their stories and their
sort of tips and advice around,you know, just how to do makeup,
or different sort of wigs andthings that you can get. And I
(11:23):
don't think that was really thecase, sort of when my hair first
came out. So I think, yeah, it'snice that the there are a lot
more things that you can sort oftap into nowadays.
Chris (11:33):
The social media stuff is really helpful. Definitely. Lots
of pluses to that. But thenindividuals, may you still find
that behind closed doors inprivate that this, they still
have to process and come toterms with, you know, whatever
it is, they're dealing withtheir own personal and private
challengers. Have there beenparticular days seasons act,
(11:53):
things that have been that washard, you know, on reflection,
looking back over those years?
Yeah, this was definitely thehardest time of the things that
you can identify as beingchallenging.
Laura (12:02):
Yeah, so I think when my hair first came out, and I got
my wig, I then felt like, Okay,this feels like, you know, feel
quite normal again now andwearing this. And I can almost
like, hide what's happened, Ifelt quite safe wearing my wig
out in public. I felt like, oh,I can blend in here. But I did
have a fear of, oh, no, willsomeone bump into me and it'll
(12:24):
come off? Or what about if I'mout in the wind, or what about
if I want to go swimming or sortof those kinds of different
types of environments, I feltlike that was like, more
difficult to navigate. And Ithink it did really feel quite
anxious at times, because I justwanted to sort of blend in. And
I didn't always feel like thatwas so possible. Even things
(12:45):
like if someone gives you a hug,sometimes like the pull the back
of your hair. So I would hugpeople like with my hand on the
top of my head, just to makesure that sort of nothing was at
risk. And then I think also, Iwas living in different cultures
at the time. So I didn't reallywant to take off in the house.
But it could get quite itchy. Sothat wasn't really the best for
my head or just comfort. Sothinking that was quite
(13:07):
difficult to feel comfortableand sort of accept what had
happened.
Chris (13:11):
Much of that sort of that you've learned is that just
through your own time andexperience, or some of those
places like alopecia UK, youknow, did you go there for
reassurance that no, your wigwon't blow off in the wind? Or
how did you become comfortablewith and assured that you know,
the things that you were fearingwouldn't happen?
Laura (13:32):
So I actually met a lady in a wig shop who is so kind, so
compassionate, so experienced.
And she really kind of helped meto understand how best to wear
the wig and how like versatileand durable it was. And I think
probably speaking to her and herkind of Yeah, explaining how
many people she's worked with,and how little sort of
(13:52):
incidents, and I guess there'sbeen, I think she really helped
me. Yeah, and I think also justexperience of, you know, you're
sort of out and about, you'renothing terrible is happening.
And then you build thatconfidence that actually, maybe
it's okay, we start withanything new, I guess you just
it's a bit of a trial and error,isn't it and you feel more
comfortable as time sort of goesby,
Claire (14:15):
I feel like that must have been a real journey,
especially the wig side of it.
And we didn't actually know thatyou had alopecia. So we've known
you for a while and your wig isamazing. There's no I would say
there's nothing about it. Thateven suggests it's a wig. So I
was quite almost reallysurprised when you told us. But
that can't have been where youstarted with the journey. I'm
sure that you've you've had totry different things along the
way. Has there been a journeywith the week where you've
(14:38):
started somewhere and thenthought I need to get a better
one or I need to get a morecomfortable one or what's sort
of the practical side been like?
Laura (14:45):
So I've gone for some different styles over the years.
I even went for a differentcolour at one point because at
one stage I thought I'll embracethis opportunity to have
completely different style thatmy hair doesn't grow in a
particular way. So I've alwayshad synthetic hair so you can
get real Aha. But it is veryexpensive. And it's not
something that you can get onthe NHS. So it was quite
comforting and reassuring thatactually synthetic is quite
(15:06):
realistic. And you just need tomake sure that you're sort of
looking after it. And yeah,upgrading every few months. So I
think I'll mainly wanted tochoose a word that was the same
or near ish to my natural hair.
Because as I said earlier, itfelt like part of my identity,
and I just wanted to sort ofblend in and be kind of as I was
with my natural hair, but on mywedding, I actually had real
(15:29):
hair. So I bought kind of onethat I could then style, because
that was something that Ithought about, like, Oh, don't
want to just have exactly thesame style as every other day.
Because on your wedding day, youwant to sort of something a bit
more interesting. So that wasnice to be able to have sort of
something a bit more special. Atwork. Yeah, so it was the exact
same colour as, as my year sortof synthetic hair. And I don't
(15:53):
think anyone would havenecessarily No, and they
probably just thought I killedthe other half. Yeah. So yeah,
Chris (16:00):
I'm glad you mentioned your wedding. Because in part
two of the conversation,hopefully we're gonna get to
speak to your lovely husband,John. Yes. What on earth? Was it
like dating, meeting someone forthe first time and knowing how
do you raise this? How do youtalk about this and other bits
as well? And then you talkedabout having other autoimmune
(16:20):
conditions? Yeah, nerves,anxiety, fear, or we're
completely fine with just likemeeting a guy meeting John and
being like, Hey, this is me allof me.
Laura (16:32):
Yeah, I think that was quite a big thing, not knowing
how someone would react to kindof explaining that I look one
way, but actually, when I takemy wig off, I look quite
different. And knowing whetherthat would put someone off would
know and whether they wouldstill be attracted to me. So
yeah, I think that was a reallybig thing. And I remember
(16:54):
actually, one person told me,'Oh, if you're going on an
online dating site, and you're,you know, not telling people
that you wear a wig, it's falseadvertising'. And then I
thought, am I going to have tolike, put a little disclaimer on
here.
Chris (17:09):
I love that you've 'advertised' yourself.
Laura (17:12):
So I didn't want to do that, obviously, though,
definitely was quite nervousabout sort of explaining that
and sort of it being understoodor being accepted on. So it did
sort of make me think, when doyou raise this question when
dating? Like, do you get out theway straightaway? Or do you wait
until someone knows you wellenough to not be like freaked
out by that? So when I met John,we actually met online. And
(17:35):
before we'd met in person, I hada conversation with him on the
phone, and basically told himbefore that, you know, this was
the situation. And his reply wasno problem. That's fine. But I
did think, well, he's not goingto say anything different
disease. So I thought the relaywill only know when I show him
(17:56):
in person, like when you know,actually take my wig off, and
whether he still feels the same,because it will be quite mean to
just sort of stop speaking tosomeone after that. And I knew
we wouldn't do that. But I guessit also does sort of show the
character of someone if they areput off by something that's
quite superficial. So it wasquite like a definitely more
(18:17):
nerve wracking process to justregularly dating because I felt
like I had this like, almostlike a secret that had to get
out at some point.
Chris (18:25):
I feel like I shouldn't know the answer to this. When
during a normal day or week, areyou without your wig without
hair?
Laura (18:32):
So...
Claire (18:33):
Hang on. Why would you know the answer to that?
Laura (18:34):
Yeah. I was thinking that!
Chris (18:35):
I can't assume anything.
Sometimes women just knowthings! I'll rephrase this. So
when during a normal day orweek, are you without your wig
without hair?
Laura (18:48):
Yeah, so it can get quite itchy. And it can be a bit like
wearing a woolly hat all day. Sooften, when I've finished work,
and I've got home, I will thentake it off, then I used to
always wear scarves or like hatsin the evening instead. But now
I don't really unless it'sparticularly cold in winter. So
yeah, mainly just in the house,when I know no one's visiting, I
(19:09):
would just take it off.
Claire (19:12):
For people listening who maybe are going through this
or in the early stages of it,especially if they're young. How
do you feel now when you look atyourself without your wig on?
Has that changed over the years?
Laura (19:22):
I think probably when I first saw myself without a word,
I think I was like, just felt indenial. Like I didn't really
want to look in the mirror. Likeit was like it didn't feel like
me. Whereas now as the yearshave gone by, it feels very
normal. I feel like I look atmyself and think Yeah, you look
good. Like it feels you know,just you just sort of I don't
(19:42):
know get used to it and maybesee yourself in a slightly
different light. So it feelsquite normal for me to see
myself with or without the wig.
And a lot of people actually sayI've got very nice head it was a
strange compliment but when Iwas around friends initially
without they would say I was inyour head. So nice. I was in
like such a good shape. And itwas just like a strange thing to
(20:03):
say. But yeah, I don't know, itwas, I guess helped in some
complimentary way.
Claire (20:09):
Yeah.
Chris (20:10):
And were there things that John did, or John said that
really helped in that sort ofreassurance theme.
Laura (20:17):
Yeah, I think probably initially with him not being
fazed by me telling him and thensort of later on money did see
me without my hair, you know, hewas exactly the same. There
wasn't like a shock. Therewasn't a sort of there couldn't
read anything subtly underlyingthat was like thinking that he
(20:37):
was feeling an indifferent. Ithink that probably helped me
feel better, and just helpedeverything feel more normalised.
Yeah. So I think just that kindof acceptance and sort of
feeling attractive with orwithout it. Yeah, really, sort
of helped made a difference.
Claire (20:54):
I think that's really encouraging for people
listening, if they are scaredabout getting into
relationships, and how arepeople going to feel I feel like
how you've done it seems to belike a really wise way of going
about it, you tell people upfront, so you didn't have to
worry about two, three monthsdown the line? Do I need to tell
them? How do I do this? So youknew up front, if they were
interested in being with you,you've kind of you've been
honest about it, and you've metsomebody who's encouraged you in
(21:16):
it. And I just think that's areally lovely kind of story of
hope that you can meet someonewho loves you for who you are,
it doesn't matter to them. Andyou can feel better about
yourself as well as the years goon. And I think that really
helps when you meet somebody whoaffirms that. So I like to hope
that would encourage people.
Yeah, worried about that.
Chris (21:32):
I'm glad you pick up on hope. Because I think there's a
whole bit we can talk about interms of hope. I don't think we
mentioned this earlier on,because when alopecia arrived in
your life, there was a spell onyour hair grew back, and you
must have thought thenhallelujah. But then a while
later, you'd lost it all again.
And it hasn't gone back sincethat time. What was that? Like
in terms of thinking? Is this itis this the sort of the healing,
(21:53):
the miracle is this the thetestimony of I did have alopecia
and now it's gone. But then youhad to overcome the loss of your
hair a second time.
Laura (22:04):
So the second time I had alopecia, totalis, not alopecia
universalis. So that was that Ijust lost the hair on my head,
not long hair on my whole body.
So it was a shock. And it wasdisappointing. But I think it
felt slightly easier because Ihad eyebrows and eyelashes. And
those are the things that werequite difficult for me to lose
because your eyelashes protectyour eyes from vection. And even
(22:27):
just things that have a nosehair not having that your nose
becomes quite watery. And youknow, not having eye brows, it
can kind of change the look ofyour face. So I think for me,
probably initially, those aresome of the most difficult
parts. And then when I lost thehair on my head, it was you
know, I would much prefer tohave had it, but I was still
(22:48):
quite thankful that I had, thoseare the things. And I think
there was maybe an element ofI've been through this before,
it's not so much of a shock. Ikind of know I've managed Okay,
in the end once I've adjusted,and I can do it again. Obviously
I wanted it to just remain butit wasn't such a big thing. The
second time, I would say.
Chris (23:11):
you mentioned that in the start the conversation about the
the when or if. So where are younow? Are you living as though it
won't grow back. But if it doesgreat, or I'm hoping that it
will grow back.
Laura (23:22):
So it's been five years now since I've not had any hair
on my head. And I think yeah,just just feel quite normal. So
I would still like it will bebrilliant if it did go back. But
I don't feel like I'm waiting inMay with the same way as I was.
I felt like it would be a bonusrather than this has to happen.
Or I've sort of lost a part ofmyself for good. It's almost
(23:45):
like a new love a differentlevel of acceptance, I guess of
kind of what the currentsituation is. And
Chris (23:52):
Why do you think that's changed? I'm no longer waiting
now as I was.
Laura (23:56):
Maybe because it I've sort of not had her for so long.
But I think it has probably madequite a difference that I'm now
married. And one of my fearswas, will I meet someone who
will accept me and be attractedto me without her? And I think
now that's not a kind ofconsideration, that probably
does make quite a bigdifference.
Claire (24:17):
What stories have you got of how other people have
reacted to it? Or have you hadany comments that have been
positive or negative?
Laura (24:24):
I think yeah, all positive. I can't think of any
one who's been particularlynegative. I think generally,
because I didn't really have atime when I just chose not to
wear hair at all like a week atall. There was more sort of
compliments around the week thatI was wearing. A lot of people
often didn't know it was a wig.
I had one lady in my office whocame up to me with a pen and
(24:45):
paper and said Oh hairdresserdid you go to because I like the
same style as you. And so thosesorts of moments when you think
this one put you up to this butactually she just genuinely
wanted the same style and and sothat was really positive
reaction, or just people in thestreet as sometimes still get
that now when people say, oh,like the colour of your hair or
your style, you know, things.
(25:08):
And so that's quite likereassuring. And then yeah,
family and friends have alwaysbeen very sort of supportive on
the journey. And I think we allhave our own, like, insecurities
that we're more aware of,because our own and everyone has
their own things. So I think wecan make certain things a bigger
issue than maybe what otherpeople perceive them to be. I
(25:30):
think even just speaking to someof my friends who have Afro
hair, and they're, it's sonormal for them to have wigs and
weaves and it's just not a tabooor an issue or seen as like
unusual. And I think that sortof can feel like it sort of
normalises everything a bit moreas well.
Claire (25:47):
Have you ever been to any stages of asking why we ask
all our guests if that's beensomething they've had to wrestle
with? At any point? Did you everhave a sort of a why me? Why am
I going through this kind ofstage?
Laura (25:56):
I don't think I necessarily thought Why me? I
did think why is this happening,but not why specifically to me,
I'd had sort of health problemsas a child. And so I was quite
familiar with sort of health notalways been a given. And I think
I did sort of have adetermination for it like not to
defy me and not to hold me back.
And I think it probably gave memore of a drive to not make it
(26:20):
something that would stop mefrom doing the things that I
wanted to in life. One of thethings
Chris (26:27):
I think of one of the things that hearing your story
reminds me of his in our ownstory of childlessness, because
we're quite open people. Clearlywe love podcasting, we love
talking about our sort of ourown circumstances and trying to
help others. But we've had tolearn actually, not everything
needs to be shared, then we wereto open the start. And then part
of certainly Claire's journeywas learning. I don't have to
(26:50):
tell everybody I can keep someof this private, has there been
a elements with yourself ofactually, I don't need to share,
you know, the parts of this Ican keep just private between
myself and John or just yourselfrather than feeling like I need
to be open. I need to be anambassador for alopecia. I need
to tell people proactively
Laura (27:09):
Yeah, I think probably early on, I felt more of a need
to tell people, because I kindof assumed that they would
notice quite a difference in theway I looked. And I was having
lots of conversations ofexplaining even what alopecia
was. So there was just lots ofthe same conversations, a lot of
questions. So in a way, I guessit was kind of raising awareness
(27:30):
of it as well. And then over theyears, I think, because it's not
been so much of a sort offrontal sort of focus on my
life, I haven't really had thesame conversations with sort of
people who are don't know verywell, I would only really
mention it when I felt like itwas needed. So for example, if I
went to a spa with someone whohad hadn't told, but I'm not
(27:53):
gonna be wearing my wig in thespa, I'd mentioned it then. But
I wouldn't just sort of explainit as something about me when I
first meet people. I think it'simportant to not feel like you
have to justify anything topeople around like health or
sort of over explain. So yeah,it's more or no kind of need to
know or it comes up inconversation like, definitely,
(28:14):
I'm open, but not in a kind oftelling everyone, it has no real
reason to tell. Would you sayany good has come from having
alopecia much quicker morningroutine? So I think, yeah, very
low maintenance, it's quite easyto just always feel that you
don't have a bad hair day interms of the wig looks the same.
(28:38):
That is quite a practical andquite quite useful. I think,
yeah, maybe just buildingresilience in general. And yeah,
feeling like maybe it looksdon't sort of define you as much
as what I first thought.
Claire (28:52):
And what's your journey with hope been like throughout
this is that something thatyou've as featured at all that
you think about much?
Laura (29:00):
Very much depends on where you hope comes from? So if
my hope was in one day, my hairreturning, I think that will be
quite difficult to maintain thatlevel of hope over the years,
because you're not seeing anychanges. But I think my hope is
more being around, not lettingthis define me not letting this
hold me back. Having hope inlots of other things, and then
(29:22):
think that gives you a greaterperspective. And yeah, makes
kind of the thing that you maybefeel more insecure about or that
that loss kind of gives us adifferent perspective.
Chris (29:33):
Where do you think you'd be without any hope?
Laura (29:35):
So some people I did meet at like their support groups in
the early days, I noticed thatthe alopecia had really affected
them to a point that theystruggled to go out the house,
they struggled to engage innormal activities, and it really
held them back. And so I think Isort of saw that loss of hope
and really realised I didn'twant to let this define me or
(29:56):
hold me back. So I think yousort of let that fear get too
much, then you would have thatloss of hope. And then it would
affect every area of your life.
So
Chris (30:05):
One of the questions I think I'd love to ask. So
alopecia came along for youabout 15 years ago 2011. And
here we are now in 2024. If youcould do some sort of little
Magic II thing and go back andsay something to the EU of 2011,
would there be like a headlineor a main topic that you'd want
to offer to you 15 years ago?
Laura (30:27):
I think it would probably be like, don't let it hold you
back. Don't let it define you.
Because I think those are themajor risks with something like
alopecia, I think I would justwant to make sure that it didn't
stop me from from doinganything.
Claire (30:43):
And I know that you've mentioned, as a side note to us,
so otherwise, it'd be a weirdquestion for me to ask that
there have been some humorousmoments as you've been through
this journey. So have you got anexample of some of the things
that have made it more funny?
Laura (30:55):
I think one of the most unexpected moments was when I
was deciding whether to sort ofshow Jonathan hair without my
wig on. And I was putting offfor so long, didn't know how to
do it. And we were sitting onthe sofa one day, and he just
moved his elbow in oneparticular way. And the wig went
(31:17):
fly and into the room into themiddle of the floor. And I was
mortified, and so shocked. Andhe was quite shocked as well.
Because in however many yearsover 10 years, nothing like that
ever happened. And no, not evensmall mishap. So this was very
extreme. And that was thereveal. So...
Claire (31:39):
Wow. Talk about ripping off the plaster!
Laura (31:41):
So we both like ran to the middle of the room to try
and pick it up and then I justlike put it on my head quickly.
And like started crying becauseI was like, oh, no, this is not
what I had in mind.
Chris (31:51):
Claire asked for a funny story, that sounds traumatising!
Laura (31:55):
It is quite funny now, looking back.
Claire (31:58):
Wow.
Laura (31:59):
And yeah, then after that, it was like, Okay, right,
you see my head now. And he'sstill the same. He's not changed
our bills or his opinion. Sothen that was like, quite
reassuring. But it was justyeah, quite funny. I've never
had that before or after I'vehopefully never again
Claire (32:15):
Of all the ways you must have pictured that
happening.
Laura (32:17):
Yeah, not like that.
Chris (32:20):
The two of you mean, one of the many things we really
like about you as a pair is yoursenses of humour. I mean, this
is the longest you've spokenprobably without laughing. I
think it's this sort of serious,deep conversation. But yeah, I
can, I can imagine there aremany moments, just the two of
you at home where something'sdone or said that you both sort
of fall into laughter orwhatever. So yeah, you can lift
(32:42):
each other up with humour.
Laura (32:43):
Yeah, I think that's definitely our sort of survival
technique, like seeing the funnyside and things. It really does
work wonders. And I think weboth have very similar humour.
And yeah, default to sort ofseeing the funny side in many
different challenges.
Chris (32:57):
Well, there'll be a part two to this, which will be a
shorter conversation with Jonwill hear His side of things,
how it felt for him when yourwig flew across the room. But to
end this conversation, thank youfor being willing to talk about
it, as you have done has beengreat, but to finish this
conversation, what's yourHerman?
Laura (33:15):
So I would say my Herman is gratitude. So gratitude is
more than just being thankfulwhen things go well. It's an
attitude of appreciation underany circumstance. So I think
there's always things that wecan have gratitude for.
Sometimes we might feel like wehave to dig deep for those
things. But I think when wechoose gratitude as a mindset,
this then affects our attitudehelps us with perspective, and
(33:39):
helps us to ride the ups anddowns of life.
Claire (33:50):
Gratitude, the more I do this podcast, the more I
understand how much of gratitudeis a choice. It's not something
people just have more of thanothers, we can all make the
choice to be grateful for whatwe have, because we all have
something to be grateful for,like I quoted in the episode
last week, 'if you have nothingto be grateful for, check your
pulse'.
Chris (34:08):
A big thank you to Laura for chatting to us and sharing
her experiences and wisdom. Andas we hinted in the intro next
week, we've got a bonus episodefor you!
Claire (34:17):
Dun dun duuuun.
Chris (34:19):
Why is that so sinister?
Claire (34:20):
I don't know. It's more upbeat.
Chris (34:23):
(trumpet noise)
Claire (34:24):
That's better.
What you won't have known wasthat Laura's husband Jon was
quietly sat listening while werecorded her episode. And
afterwards, he also agreed tochat with us about his
perspective on meeting anddating and marrying somebody
with alopecia.
Chris (34:36):
So we recorded a short bonus episode with him, and
that'll be going out next week.
He shares what it was like inthose early days of romance, and
how they both chose to sharetheir own personal stories of
trial and challenge so early inthe relationship.
Claire (34:51):
You'll also hear how he reacted to Laura's week flying
across the room, how he'smanaged with his own health
issues over the years and thehuge part that face good
communication and humour playsin their marriage.
Chris (35:00):
As for Claire and myself, you can find out all about who
we are and what we do throughour website which has links to
us on social media as well asour own story of being
childless, not by choice, a fulllist of our podcast episodes,
how to listen to a podcast andwhere, blog posts, and of course
information on what Herman's are- www.thesilentwhy.com
Claire (35:20):
Yes. And if you follow us on social media, I want to
say a huge thank you. It's notjust about numbers, but also
credibility. I've no doubtpotential guests as well as new
followers check us out at times.
And if we have a good number ofpeople that anchor what we do,
then that gives us credibilityand affirms that what we're
doing is needed
Chris (35:36):
And if you share or like our posts, well, then you're
just the best person ever. Thankyou so much
Claire (35:41):
When you're a small setup like we are, and you can't
do all the 1000s of hours neededto get a big social media
following. You really doappreciate the individuals that
support you.
Chris (35:49):
We're finishing this episode with a quote from short
story writer and novelistCynthia Ozick.
Claire (35:56):
"We often take for granted the very things that
most deserve our gratitude."
Hi, I'm Laura. And I'm here to talk about hair loss
through alopecia.
Claire (00:08):
Welcome to The Silent Why a podcast journey to see if
hope can exist in 101 differenttypes of loss and to hear from
those who have experienced them.
I'm Claire Sandys. And this ismy husband, Chris.
Chris (00:18):
And in this episode, we're chatting to a friend of
ours in-person. That's not hername!
Claire (00:23):
Yes, it's only the second time we've recorded
anything in person. So this is avery lovely change for us.
Chris (00:29):
In an unusual twist this episode comes with a bonus.
Claire (00:32):
Bum bum baaaarm.
Chris (00:33):
You'll have to wait till the end of the episode to find
out what that is.
Claire (00:37):
Anyway, back to Laura Burns, who is a social worker
for an anti modern slaverycharity, and she lives in the
Black Country. Chris, what isthe Black Country?
Chris (00:46):
Thanks. It's in the West Midlands of England. It was
actually one of the birthplacesof the Industrial Revolution,
sometimes referred to as thearea where the coal seam comes
to the surface. So basically,high levels of certain air
pollution led to it being calledthe Black Country back in the
1800s.
Claire (01:04):
And what is the coal seam?
Chris (01:07):
Gee, thanks, onwards.
Claire (01:10):
Always good to throw a bit of history in there, even
though it has nothing to do withour guest. But that's where she
lives at the moment.
Chris (01:15):
Laura started dating a friend of a friend of ours, the
lovely Jon, and we've got toknow them as a couple over the
last few years and then had theprivilege of being at their
wedding in 2022.
Claire (01:25):
And this couple have had more than their fair share
of health complications fromJonn being born with renal
failure and later having akidney transplant. And Laura
having had brain surgery morethan once in the last few years.
But it was only recently that wealso found out that Laura has
alopecia. Her wig is amazing.
And we hadn't realised this wassomething else that she was
dealing with. So as she's such afriendly, open person, we asked
her if she'd be willing to comeand chat to us on the podcast
(01:47):
about what it's like to loseyour hair. And she said, Yes.
Chris (01:52):
It was nearly 15 years ago, when alopecia first entered
Laura's life when she was in herearly 20s.
Laura (01:57):
Shortly after all the hair on my body fell out. So it
was quite a sudden thing. Ididn't really know what was
happening. So it was quite ashock. And quite scary at the
time, because it's such avisible condition.
Claire (02:11):
Laura told us about the journey she's been on as she
found her way with alopecia, butalso how it's not always been
easy to know what to share, andwhen, with others.
Laura (02:18):
When I actually transitioned to decide, I'm
going to start wearing a wig. Ithen felt like the wig was very
obvious. And so I felt a duty totell everybody I met. So it was
quite strange, really. But Ialways felt like oh, I'll try
and get this into a conversationwhen they probably weren't
really thinking about that. ButI assumed it was the elephant in
the room.
Chris (02:37):
She also shares some of the more humorous moments, one
of which is when husband Johnsaw her without her wig for the
first time.
Laura (02:43):
And we were sitting on the sofa one day, and he just
moved his elbow in oneparticular way...
Chris (02:49):
You'll have to keep listening to hear the end of
that story.
Claire (02:52):
This is a very honest conversation about what can be
very visual and a verycomplicated loss, especially
because identity is so closelyconnected with our hair quite
often. But Laura shows us howhope can find a way in and how
important gratitude has been toher.
Chris (03:05):
So let's get into it. We started the chat by asking Laura
to tell us a bit about herself,then what an average week looks
like for her.
Laura (03:15):
Hi, I'm Laura. I am currently living in the Black
Country in the West Midlands,with my husband, Jonathan. And
I'm a social worker with a antimodern slavery charity. So I
work with survivors of modernslavery to help them to get the
right legal advice and supportto be able to move forward with
(03:36):
their lives. So yeah, my worktakes up quite a lot of my week.
And then outside of work, I likemeeting up with friends for
coffee, walking to a min. Andyeah, every week looks quite
different. Really.
Chris (03:47):
Thank you. I mean, we're delighted that you've agreed to
chat to us on the podcast and inperson as well. It's great to be
here, which is brilliant.
Because this is only the secondtime that we in how many 150 odd
episodes that we've done, thatwe've actually been able to
speak to somebody in person,which is lovely, and makes a big
difference. So thank you forthat. And you're not done this
before. So we're really, reallygrateful. You're willing to come
(04:09):
and chat to us thinking
Claire (04:12):
yeah, and we know you like not just as a guest, but we
know you as a friend as well.
Laura is actually the friend ofa friend who are both called
Jon, lots of Jon's in ourconnections. So we've known you
for a while, it's safe to saythat you've both had your fair
share of health complicationsalong the way. But you very
kindly come to chat to us aboutsomething that you went through
in your 20s which wasdiscovering that you had
(04:32):
alopecia. So why don't you tellus a bit about what alopecia is
and how you found out that youhad it.
Laura (04:38):
So alopecia is a autoimmune condition. And your
immune system is there toprotect you against infections
and diseases. But sometimes yourimmune system can sort of attack
itself and in the case ofalopecia, the immune system
attacks the hair follicles,which then causes the hair to
fall out. So There's differenttypes of alopecia. The first
(05:02):
type being alopecia areata,where you'd get patches of hair
that falls out. And then there'salopecia totalis, which is where
you lose all hair of your head.
And then alopecia universalis,which is where you lose all hair
from your whole body. Soincluding sort of eyelashes,
eyebrows. So yeah, those aresort of the main types of
alopecia. For me, it happenedreally quite suddenly. So I do
(05:25):
have some other like autoimmuneconditions that eczema and
asthma and so apparently I nowknow, that alopecia can sort of
you know, is within that familyand can also happen, just
returned from six months ofbackpacking. And so being in
lots of different countries,sort of, you know, all different
environments, where you mightthink if you're going to have
(05:45):
something like sudden hair lossthat might happen there.
However, that wasn't the case,it was, as soon as I got back,
after about a month, my hairfell out within the space of two
weeks. So quite suddenly, I was22 at the time, so like, quite
young. And initially, it was thehair on my head that came out.
And then shortly after all thehair on my body fell out. So it
(06:07):
was quite a sudden thing. Ididn't really know what was
happening. So it was quite ashock. And quite scary at the
time, because it's such avisible condition. And then
thinking sort of what do you doin that moment, initially, like
think I had a lot of questionsand just was trying to appear as
normal as possible by usingdifferent hairstyles and trying
(06:30):
to sort of cover up as much aspossible. But that was quite a
short lived thing, because itjust was falling out so quickly.
Claire (06:38):
And especially that age as well, it carries such a big
deal when you're younger. And Ithink we can forget that as we
get older, sometimes how big itis, you know, you get a bad
haircut when you're young, andit feels like the end of your
world. So there's a lot going onthere. What were the emotions
that you were kind of goingthrough when that was happening?
Laura (06:52):
I think, probably a lot of fear about why this was
happening. And when would itcome back? And I think maybe
don't really think about it, butlike part of your identity is in
your hair, especially as yousay, as like someone in their
20s. So I just always had longblonde hair. And that was just
part of me. And so then it feltlike just losing a part of
(07:14):
yourself. And that kind of fearthat people would then see you
differently, or treat youdifferently. So yeah, just a lot
of kind of, I guess fear anduncertainty. Were probably the
main feelings at that time.
Chris (07:27):
Can I pick up on what you say about that initial thoughts
around when it will come backover whatever space of time it
may have been? Did you alwaysthink when? Or was there a point
where you had to put f into thatas well?
Laura (07:38):
Yeah, I think initially, because it did come out so
quickly. I just assumed it wouldprobably go back so quickly. And
no, that might seem like astrange sort of way of
rationalising. But yeah, I justkind of assumed it will be a
short term thing at the time.
And then I did go to see adermatologist. And they said,
there's no real sort ofmedication or cure, and it's
(07:59):
very different for each person.
And it may come back it may not.
So I think then that made mesort of question Oh, what if?
Actually, I'm one of the peoplewhere it my head doesn't return?
And what will life look likethere? So I think that probably
changed my perspective of sortof assuming it would come back
when I had that appointment.
Claire (08:19):
It's a tricky loss, because it's, it's a physical
loss. And we spoke to somebodyrecently who lost their arm. And
there's no hiding that, youknow, you see someone with one
arm, you have to either talkabout it or ignore it, it's very
obvious. But with this one,there are ways to sort of hide
it. And like you said, you'retrying to do different things.
So it's a difficult one, becauseyou must have to decide who you
tell. And when you tell what ifyou tell anybody. And you must
be wondering, are peoplewondering about this? So how did
(08:42):
you go about talking to othersabout it? Or did you not really
talk about it?
Laura (08:45):
I think when my hair first fell out, I did talk about
it quite a lot, because I wastrying these different styles.
And I almost felt like I neededto explain why I was doing so
many different things. And thenwhen I actually transitioned to
decide, I'm going to startwearing a wig because there's
not really anything left and theneed to sort of accept this. I
(09:07):
then felt like the wig was veryobvious. And so I felt a duty to
tell everybody I met. So it wasquite strange, really. But I
always felt like oh, I'll tryand get this into a conversation
when they probably weren'treally thinking about that. But
I assumed it was the elephant inthe room that I needed to just
sort of let people know about.
So that was early on. And thenas the years have gone by, it's
(09:28):
become more normal to me, Iguess. It's not something that I
think of at the forefront of mymind when I'm meeting new
people. And I don't assume thatpeople think about it or need to
know in the same way so it's nowonly really if it comes up in
conversation that I would sortof talk about it with new
people.
Claire (09:48):
So did it feel quite lonely at that time because I
know we've spoken to you andyou've said since then you've
discovered there are nowpodcasts about it. Obviously
there's social media, how did itfeel sort of pre all that
happening?
Laura (09:58):
Yes, it did feel quite Like not sure sort of where
exactly to turn initially. Soonce you've had the diagnosis,
there isn't really well, there'skind of some treatment that you
can try. But you're not reallyunder a, an NHS service for sort
of like the emotional side of,you know, support. And so I did
(10:18):
find that one charity that wasaround at the time, I remember
was alopecia UK. And there werelocal support groups. So I went
along to one of those. And theywere really great because it was
other people who had had similarexperiences to me. And they did
not just talk about things, butthey also brought someone in to
do like Indian Head Massage, orreflexology, or just sort of
(10:40):
some tips on how to draweyebrows. And so it was quite
practical as well. So yeah, thatwas like, quite helpful. And
then I was just sitting next tosomeone in my office at the
time, who had previously hadalopecia, which was quite
unusual, because I've actuallynever come across anyone, since
who kind of in regular, like dayto day life that that has it. So
(11:02):
yeah, that was really helpful tohave that lady at that time. But
with the sort of advancements ofsocial media, there are a lot
more podcasts nowadays is likeInstagram reels. There's a
platform for regular people toshare their stories and their
sort of tips and advice around,you know, just how to do makeup,
or different sort of wigs andthings that you can get. And I
(11:23):
don't think that was really thecase, sort of when my hair first
came out. So I think, yeah, it'snice that the there are a lot
more things that you can sort oftap into nowadays.
Chris (11:33):
The social media stuff is really helpful. Definitely. Lots
of pluses to that. But thenindividuals, may you still find
that behind closed doors inprivate that this, they still
have to process and come toterms with, you know, whatever
it is, they're dealing withtheir own personal and private
challengers. Have there beenparticular days seasons act,
(11:53):
things that have been that washard, you know, on reflection,
looking back over those years?
Yeah, this was definitely thehardest time of the things that
you can identify as beingchallenging.
Laura (12:02):
Yeah, so I think when my hair first came out, and I got
my wig, I then felt like, Okay,this feels like, you know, feel
quite normal again now andwearing this. And I can almost
like, hide what's happened, Ifelt quite safe wearing my wig
out in public. I felt like, oh,I can blend in here. But I did
have a fear of, oh, no, willsomeone bump into me and it'll
(12:24):
come off? Or what about if I'mout in the wind, or what about
if I want to go swimming or sortof those kinds of different
types of environments, I feltlike that was like, more
difficult to navigate. And Ithink it did really feel quite
anxious at times, because I justwanted to sort of blend in. And
I didn't always feel like thatwas so possible. Even things
(12:45):
like if someone gives you a hug,sometimes like the pull the back
of your hair. So I would hugpeople like with my hand on the
top of my head, just to makesure that sort of nothing was at
risk. And then I think also, Iwas living in different cultures
at the time. So I didn't reallywant to take off in the house.
But it could get quite itchy. Sothat wasn't really the best for
my head or just comfort. Sothinking that was quite
(13:07):
difficult to feel comfortableand sort of accept what had
happened.
Chris (13:11):
Much of that sort of that you've learned is that just
through your own time andexperience, or some of those
places like alopecia UK, youknow, did you go there for
reassurance that no, your wigwon't blow off in the wind? Or
how did you become comfortablewith and assured that you know,
the things that you were fearingwouldn't happen?
Laura (13:32):
So I actually met a lady in a wig shop who is so kind, so
compassionate, so experienced.
And she really kind of helped meto understand how best to wear
the wig and how like versatileand durable it was. And I think
probably speaking to her and herkind of Yeah, explaining how
many people she's worked with,and how little sort of
(13:52):
incidents, and I guess there'sbeen, I think she really helped
me. Yeah, and I think also justexperience of, you know, you're
sort of out and about, you'renothing terrible is happening.
And then you build thatconfidence that actually, maybe
it's okay, we start withanything new, I guess you just
it's a bit of a trial and error,isn't it and you feel more
comfortable as time sort of goesby,
Claire (14:15):
I feel like that must have been a real journey,
especially the wig side of it.
And we didn't actually know thatyou had alopecia. So we've known
you for a while and your wig isamazing. There's no I would say
there's nothing about it. Thateven suggests it's a wig. So I
was quite almost reallysurprised when you told us. But
that can't have been where youstarted with the journey. I'm
sure that you've you've had totry different things along the
way. Has there been a journeywith the week where you've
(14:38):
started somewhere and thenthought I need to get a better
one or I need to get a morecomfortable one or what's sort
of the practical side been like?
Laura (14:45):
So I've gone for some different styles over the years.
I even went for a differentcolour at one point because at
one stage I thought I'll embracethis opportunity to have
completely different style thatmy hair doesn't grow in a
particular way. So I've alwayshad synthetic hair so you can
get real Aha. But it is veryexpensive. And it's not
something that you can get onthe NHS. So it was quite
comforting and reassuring thatactually synthetic is quite
(15:06):
realistic. And you just need tomake sure that you're sort of
looking after it. And yeah,upgrading every few months. So I
think I'll mainly wanted tochoose a word that was the same
or near ish to my natural hair.
Because as I said earlier, itfelt like part of my identity,
and I just wanted to sort ofblend in and be kind of as I was
with my natural hair, but on mywedding, I actually had real
(15:29):
hair. So I bought kind of onethat I could then style, because
that was something that Ithought about, like, Oh, don't
want to just have exactly thesame style as every other day.
Because on your wedding day, youwant to sort of something a bit
more interesting. So that wasnice to be able to have sort of
something a bit more special. Atwork. Yeah, so it was the exact
same colour as, as my year sortof synthetic hair. And I don't
(15:53):
think anyone would havenecessarily No, and they
probably just thought I killedthe other half. Yeah. So yeah,
Chris (16:00):
I'm glad you mentioned your wedding. Because in part
two of the conversation,hopefully we're gonna get to
speak to your lovely husband,John. Yes. What on earth? Was it
like dating, meeting someone forthe first time and knowing how
do you raise this? How do youtalk about this and other bits
as well? And then you talkedabout having other autoimmune
(16:20):
conditions? Yeah, nerves,anxiety, fear, or we're
completely fine with just likemeeting a guy meeting John and
being like, Hey, this is me allof me.
Laura (16:32):
Yeah, I think that was quite a big thing, not knowing
how someone would react to kindof explaining that I look one
way, but actually, when I takemy wig off, I look quite
different. And knowing whetherthat would put someone off would
know and whether they wouldstill be attracted to me. So
yeah, I think that was a reallybig thing. And I remember
(16:54):
actually, one person told me,'Oh, if you're going on an
online dating site, and you're,you know, not telling people
that you wear a wig, it's falseadvertising'. And then I
thought, am I going to have tolike, put a little disclaimer on
here.
Chris (17:09):
I love that you've 'advertised' yourself.
Laura (17:12):
So I didn't want to do that, obviously, though,
definitely was quite nervousabout sort of explaining that
and sort of it being understoodor being accepted on. So it did
sort of make me think, when doyou raise this question when
dating? Like, do you get out theway straightaway? Or do you wait
until someone knows you wellenough to not be like freaked
out by that? So when I met John,we actually met online. And
(17:35):
before we'd met in person, I hada conversation with him on the
phone, and basically told himbefore that, you know, this was
the situation. And his reply wasno problem. That's fine. But I
did think, well, he's not goingto say anything different
disease. So I thought the relaywill only know when I show him
(17:56):
in person, like when you know,actually take my wig off, and
whether he still feels the same,because it will be quite mean to
just sort of stop speaking tosomeone after that. And I knew
we wouldn't do that. But I guessit also does sort of show the
character of someone if they areput off by something that's
quite superficial. So it wasquite like a definitely more
(18:17):
nerve wracking process to justregularly dating because I felt
like I had this like, almostlike a secret that had to get
out at some point.
Chris (18:25):
I feel like I shouldn't know the answer to this. When
during a normal day or week, areyou without your wig without
hair?
Laura (18:32):
So...
Claire (18:33):
Hang on. Why would you know the answer to that?
Laura (18:34):
Yeah. I was thinking that!
Chris (18:35):
I can't assume anything.
Sometimes women just knowthings! I'll rephrase this. So
when during a normal day orweek, are you without your wig
without hair?
Laura (18:48):
Yeah, so it can get quite itchy. And it can be a bit like
wearing a woolly hat all day. Sooften, when I've finished work,
and I've got home, I will thentake it off, then I used to
always wear scarves or like hatsin the evening instead. But now
I don't really unless it'sparticularly cold in winter. So
yeah, mainly just in the house,when I know no one's visiting, I
(19:09):
would just take it off.
Claire (19:12):
For people listening who maybe are going through this
or in the early stages of it,especially if they're young. How
do you feel now when you look atyourself without your wig on?
Has that changed over the years?
Laura (19:22):
I think probably when I first saw myself without a word,
I think I was like, just felt indenial. Like I didn't really
want to look in the mirror. Likeit was like it didn't feel like
me. Whereas now as the yearshave gone by, it feels very
normal. I feel like I look atmyself and think Yeah, you look
good. Like it feels you know,just you just sort of I don't
(19:42):
know get used to it and maybesee yourself in a slightly
different light. So it feelsquite normal for me to see
myself with or without the wig.
And a lot of people actually sayI've got very nice head it was a
strange compliment but when Iwas around friends initially
without they would say I was inyour head. So nice. I was in
like such a good shape. And itwas just like a strange thing to
(20:03):
say. But yeah, I don't know, itwas, I guess helped in some
complimentary way.
Claire (20:09):
Yeah.
Chris (20:10):
And were there things that John did, or John said that
really helped in that sort ofreassurance theme.
Laura (20:17):
Yeah, I think probably initially with him not being
fazed by me telling him and thensort of later on money did see
me without my hair, you know, hewas exactly the same. There
wasn't like a shock. Therewasn't a sort of there couldn't
read anything subtly underlyingthat was like thinking that he
(20:37):
was feeling an indifferent. Ithink that probably helped me
feel better, and just helpedeverything feel more normalised.
Yeah. So I think just that kindof acceptance and sort of
feeling attractive with orwithout it. Yeah, really, sort
of helped made a difference.
Claire (20:54):
I think that's really encouraging for people
listening, if they are scaredabout getting into
relationships, and how arepeople going to feel I feel like
how you've done it seems to belike a really wise way of going
about it, you tell people upfront, so you didn't have to
worry about two, three monthsdown the line? Do I need to tell
them? How do I do this? So youknew up front, if they were
interested in being with you,you've kind of you've been
honest about it, and you've metsomebody who's encouraged you in
(21:16):
it. And I just think that's areally lovely kind of story of
hope that you can meet someonewho loves you for who you are,
it doesn't matter to them. Andyou can feel better about
yourself as well as the years goon. And I think that really
helps when you meet somebody whoaffirms that. So I like to hope
that would encourage people.
Yeah, worried about that.
Chris (21:32):
I'm glad you pick up on hope. Because I think there's a
whole bit we can talk about interms of hope. I don't think we
mentioned this earlier on,because when alopecia arrived in
your life, there was a spell onyour hair grew back, and you
must have thought thenhallelujah. But then a while
later, you'd lost it all again.
And it hasn't gone back sincethat time. What was that? Like
in terms of thinking? Is this itis this the sort of the healing,
(21:53):
the miracle is this the thetestimony of I did have alopecia
and now it's gone. But then youhad to overcome the loss of your
hair a second time.
Laura (22:04):
So the second time I had alopecia, totalis, not alopecia
universalis. So that was that Ijust lost the hair on my head,
not long hair on my whole body.
So it was a shock. And it wasdisappointing. But I think it
felt slightly easier because Ihad eyebrows and eyelashes. And
those are the things that werequite difficult for me to lose
because your eyelashes protectyour eyes from vection. And even
(22:27):
just things that have a nosehair not having that your nose
becomes quite watery. And youknow, not having eye brows, it
can kind of change the look ofyour face. So I think for me,
probably initially, those aresome of the most difficult
parts. And then when I lost thehair on my head, it was you
know, I would much prefer tohave had it, but I was still
(22:48):
quite thankful that I had, thoseare the things. And I think
there was maybe an element ofI've been through this before,
it's not so much of a shock. Ikind of know I've managed Okay,
in the end once I've adjusted,and I can do it again. Obviously
I wanted it to just remain butit wasn't such a big thing. The
second time, I would say.
Chris (23:11):
you mentioned that in the start the conversation about the
the when or if. So where are younow? Are you living as though it
won't grow back. But if it doesgreat, or I'm hoping that it
will grow back.
Laura (23:22):
So it's been five years now since I've not had any hair
on my head. And I think yeah,just just feel quite normal. So
I would still like it will bebrilliant if it did go back. But
I don't feel like I'm waiting inMay with the same way as I was.
I felt like it would be a bonusrather than this has to happen.
Or I've sort of lost a part ofmyself for good. It's almost
(23:45):
like a new love a differentlevel of acceptance, I guess of
kind of what the currentsituation is. And
Chris (23:52):
Why do you think that's changed? I'm no longer waiting
now as I was.
Laura (23:56):
Maybe because it I've sort of not had her for so long.
But I think it has probably madequite a difference that I'm now
married. And one of my fearswas, will I meet someone who
will accept me and be attractedto me without her? And I think
now that's not a kind ofconsideration, that probably
does make quite a bigdifference.
Claire (24:17):
What stories have you got of how other people have
reacted to it? Or have you hadany comments that have been
positive or negative?
Laura (24:24):
I think yeah, all positive. I can't think of any
one who's been particularlynegative. I think generally,
because I didn't really have atime when I just chose not to
wear hair at all like a week atall. There was more sort of
compliments around the week thatI was wearing. A lot of people
often didn't know it was a wig.
I had one lady in my office whocame up to me with a pen and
(24:45):
paper and said Oh hairdresserdid you go to because I like the
same style as you. And so thosesorts of moments when you think
this one put you up to this butactually she just genuinely
wanted the same style and and sothat was really positive
reaction, or just people in thestreet as sometimes still get
that now when people say, oh,like the colour of your hair or
your style, you know, things.
(25:08):
And so that's quite likereassuring. And then yeah,
family and friends have alwaysbeen very sort of supportive on
the journey. And I think we allhave our own, like, insecurities
that we're more aware of,because our own and everyone has
their own things. So I think wecan make certain things a bigger
issue than maybe what otherpeople perceive them to be. I
(25:30):
think even just speaking to someof my friends who have Afro
hair, and they're, it's sonormal for them to have wigs and
weaves and it's just not a tabooor an issue or seen as like
unusual. And I think that sortof can feel like it sort of
normalises everything a bit moreas well.
Claire (25:47):
Have you ever been to any stages of asking why we ask
all our guests if that's beensomething they've had to wrestle
with? At any point? Did you everhave a sort of a why me? Why am
I going through this kind ofstage?
Laura (25:56):
I don't think I necessarily thought Why me? I
did think why is this happening,but not why specifically to me,
I'd had sort of health problemsas a child. And so I was quite
familiar with sort of health notalways been a given. And I think
I did sort of have adetermination for it like not to
defy me and not to hold me back.
And I think it probably gave memore of a drive to not make it
(26:20):
something that would stop mefrom doing the things that I
wanted to in life. One of thethings
Chris (26:27):
I think of one of the things that hearing your story
reminds me of his in our ownstory of childlessness, because
we're quite open people. Clearlywe love podcasting, we love
talking about our sort of ourown circumstances and trying to
help others. But we've had tolearn actually, not everything
needs to be shared, then we wereto open the start. And then part
of certainly Claire's journeywas learning. I don't have to
(26:50):
tell everybody I can keep someof this private, has there been
a elements with yourself ofactually, I don't need to share,
you know, the parts of this Ican keep just private between
myself and John or just yourselfrather than feeling like I need
to be open. I need to be anambassador for alopecia. I need
to tell people proactively
Laura (27:09):
Yeah, I think probably early on, I felt more of a need
to tell people, because I kindof assumed that they would
notice quite a difference in theway I looked. And I was having
lots of conversations ofexplaining even what alopecia
was. So there was just lots ofthe same conversations, a lot of
questions. So in a way, I guessit was kind of raising awareness
(27:30):
of it as well. And then over theyears, I think, because it's not
been so much of a sort offrontal sort of focus on my
life, I haven't really had thesame conversations with sort of
people who are don't know verywell, I would only really
mention it when I felt like itwas needed. So for example, if I
went to a spa with someone whohad hadn't told, but I'm not
(27:53):
gonna be wearing my wig in thespa, I'd mentioned it then. But
I wouldn't just sort of explainit as something about me when I
first meet people. I think it'simportant to not feel like you
have to justify anything topeople around like health or
sort of over explain. So yeah,it's more or no kind of need to
know or it comes up inconversation like, definitely,
(28:14):
I'm open, but not in a kind oftelling everyone, it has no real
reason to tell. Would you sayany good has come from having
alopecia much quicker morningroutine? So I think, yeah, very
low maintenance, it's quite easyto just always feel that you
don't have a bad hair day interms of the wig looks the same.
(28:38):
That is quite a practical andquite quite useful. I think,
yeah, maybe just buildingresilience in general. And yeah,
feeling like maybe it looksdon't sort of define you as much
as what I first thought.
Claire (28:52):
And what's your journey with hope been like throughout
this is that something thatyou've as featured at all that
you think about much?
Laura (29:00):
Very much depends on where you hope comes from? So if
my hope was in one day, my hairreturning, I think that will be
quite difficult to maintain thatlevel of hope over the years,
because you're not seeing anychanges. But I think my hope is
more being around, not lettingthis define me not letting this
hold me back. Having hope inlots of other things, and then
(29:22):
think that gives you a greaterperspective. And yeah, makes
kind of the thing that you maybefeel more insecure about or that
that loss kind of gives us adifferent perspective.
Chris (29:33):
Where do you think you'd be without any hope?
Laura (29:35):
So some people I did meet at like their support groups in
the early days, I noticed thatthe alopecia had really affected
them to a point that theystruggled to go out the house,
they struggled to engage innormal activities, and it really
held them back. And so I think Isort of saw that loss of hope
and really realised I didn'twant to let this define me or
(29:56):
hold me back. So I think yousort of let that fear get too
much, then you would have thatloss of hope. And then it would
affect every area of your life.
So
Chris (30:05):
One of the questions I think I'd love to ask. So
alopecia came along for youabout 15 years ago 2011. And
here we are now in 2024. If youcould do some sort of little
Magic II thing and go back andsay something to the EU of 2011,
would there be like a headlineor a main topic that you'd want
to offer to you 15 years ago?
Laura (30:27):
I think it would probably be like, don't let it hold you
back. Don't let it define you.
Because I think those are themajor risks with something like
alopecia, I think I would justwant to make sure that it didn't
stop me from from doinganything.
Claire (30:43):
And I know that you've mentioned, as a side note to us,
so otherwise, it'd be a weirdquestion for me to ask that
there have been some humorousmoments as you've been through
this journey. So have you got anexample of some of the things
that have made it more funny?
Laura (30:55):
I think one of the most unexpected moments was when I
was deciding whether to sort ofshow Jonathan hair without my
wig on. And I was putting offfor so long, didn't know how to
do it. And we were sitting onthe sofa one day, and he just
moved his elbow in oneparticular way. And the wig went
(31:17):
fly and into the room into themiddle of the floor. And I was
mortified, and so shocked. Andhe was quite shocked as well.
Because in however many yearsover 10 years, nothing like that
ever happened. And no, not evensmall mishap. So this was very
extreme. And that was thereveal. So...
Claire (31:39):
Wow. Talk about ripping off the plaster!
Laura (31:41):
So we both like ran to the middle of the room to try
and pick it up and then I justlike put it on my head quickly.
And like started crying becauseI was like, oh, no, this is not
what I had in mind.
Chris (31:51):
Claire asked for a funny story, that sounds traumatising!
Laura (31:55):
It is quite funny now, looking back.
Claire (31:58):
Wow.
Laura (31:59):
And yeah, then after that, it was like, Okay, right,
you see my head now. And he'sstill the same. He's not changed
our bills or his opinion. Sothen that was like, quite
reassuring. But it was justyeah, quite funny. I've never
had that before or after I'vehopefully never again
Claire (32:15):
Of all the ways you must have pictured that
happening.
Laura (32:17):
Yeah, not like that.
Chris (32:20):
The two of you mean, one of the many things we really
like about you as a pair is yoursenses of humour. I mean, this
is the longest you've spokenprobably without laughing. I
think it's this sort of serious,deep conversation. But yeah, I
can, I can imagine there aremany moments, just the two of
you at home where something'sdone or said that you both sort
of fall into laughter orwhatever. So yeah, you can lift
(32:42):
each other up with humour.
Laura (32:43):
Yeah, I think that's definitely our sort of survival
technique, like seeing the funnyside and things. It really does
work wonders. And I think weboth have very similar humour.
And yeah, default to sort ofseeing the funny side in many
different challenges.
Chris (32:57):
Well, there'll be a part two to this, which will be a
shorter conversation with Jonwill hear His side of things,
how it felt for him when yourwig flew across the room. But to
end this conversation, thank youfor being willing to talk about
it, as you have done has beengreat, but to finish this
conversation, what's yourHerman?
Laura (33:15):
So I would say my Herman is gratitude. So gratitude is
more than just being thankfulwhen things go well. It's an
attitude of appreciation underany circumstance. So I think
there's always things that wecan have gratitude for.
Sometimes we might feel like wehave to dig deep for those
things. But I think when wechoose gratitude as a mindset,
this then affects our attitudehelps us with perspective, and
(33:39):
helps us to ride the ups anddowns of life.
Claire (33:50):
Gratitude, the more I do this podcast, the more I
understand how much of gratitudeis a choice. It's not something
people just have more of thanothers, we can all make the
choice to be grateful for whatwe have, because we all have
something to be grateful for,like I quoted in the episode
last week, 'if you have nothingto be grateful for, check your
pulse'.
Chris (34:08):
A big thank you to Laura for chatting to us and sharing
her experiences and wisdom. Andas we hinted in the intro next
week, we've got a bonus episodefor you!
Claire (34:17):
Dun dun duuuun.
Chris (34:19):
Why is that so sinister?
Claire (34:20):
I don't know. It's more upbeat.
Chris (34:23):
(trumpet noise)
Claire (34:24):
That's better.
What you won't have known wasthat Laura's husband Jon was
quietly sat listening while werecorded her episode. And
afterwards, he also agreed tochat with us about his
perspective on meeting anddating and marrying somebody
with alopecia.
Chris (34:36):
So we recorded a short bonus episode with him, and
that'll be going out next week.
He shares what it was like inthose early days of romance, and
how they both chose to sharetheir own personal stories of
trial and challenge so early inthe relationship.
Claire (34:51):
You'll also hear how he reacted to Laura's week flying
across the room, how he'smanaged with his own health
issues over the years and thehuge part that face good
communication and humour playsin their marriage.
Chris (35:00):
As for Claire and myself, you can find out all about who
we are and what we do throughour website which has links to
us on social media as well asour own story of being
childless, not by choice, a fulllist of our podcast episodes,
how to listen to a podcast andwhere, blog posts, and of course
information on what Herman's are- www.thesilentwhy.com
Claire (35:20):
Yes. And if you follow us on social media, I want to
say a huge thank you. It's notjust about numbers, but also
credibility. I've no doubtpotential guests as well as new
followers check us out at times.
And if we have a good number ofpeople that anchor what we do,
then that gives us credibilityand affirms that what we're
doing is needed
Chris (35:36):
And if you share or like our posts, well, then you're
just the best person ever. Thankyou so much
Claire (35:41):
When you're a small setup like we are, and you can't
do all the 1000s of hours neededto get a big social media
following. You really doappreciate the individuals that
support you.
Chris (35:49):
We're finishing this episode with a quote from short
story writer and novelistCynthia Ozick.
Claire (35:56):
"We often take for granted the very things that
most deserve our gratitude."
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