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Discussion Starter · #1 ·
Hello there,

I've been flaring a lot recently, which has been really hard, but it seems to be linked to becoming photosenstive. So I've taken to wearing 'armour' - or rather 50+ sunblock and a hat. And it seems to be working: I'm not getting a malar rash at the end of the day, and I feel like I'm slowly recovering. This is great, of course, and I'll do anything if it stops me being ill, but I am finding it takes some getting used to. I've bought several cheap but nice hats, and with my friends and husband it's all fine, they are great... but I'm finding it really hard with strangers STARING at me all the time and people at my son's school etc looking at me weirdly.
It's a conundrum. On the one hand, I want to look nice and to carry off hat wearing in a glam way without looking like a 'patient' or like I'm old (I am 31 and have two small children). On the other hand, it's not actually my fashion choice to be wearing a hat in not-particularly-hot spring sunshine weather in the playground. I hate the idea of being labelled as a poseur or a show off or a weirdo, when it's not my fault. I don't blame them, I'm sure I've stared at people in hats before.

Are there people out there who have adapted to this? How have you dealt with it? It seems so trivial and yet now I feel I have a reminder of having lupus that I need to put on my head every time I walk out the door.

Also, do I need to wear a hat always or only when the sun is actually shining? We've had so much hazy sunshine or variable sunshine recently. I've just worn it all the time to be on the safe side, but what should I actually be doing?

I'd love to feel like I'm not the only one that struggles/has struggled with this change in identity...

x Hatty (in a hat)
 

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HI Hatty, it is difficult to know how much sun protection to take. I had a massive photosensitive flare in Dec, having been fine on a holiday the previous May! I am cautious now especially on cloudy, glaring light days as that is when I am more likely to get caught out. I use Liz Earles sunshade (F25) on my face all the time, mostly.. and top up with factor 50 if it is bright, whether sun or cloud. I walk every morning and wear sunglasses if bright too. I have brought some hats and hate them and haven't flared not wearing them but when it gets more summery weather I will have to consider them again and wearing 50 all the time with good UVA and UVB filters.. using piz buin at the moment which is effective. I know there are alot of others on the market that are as good. You can get sunscreen for your scalp and hair as well so that could be good to apply at times when you don't wish to wear a hat as it will stop the light connecting to your skin, just be generous with it. The benefit of a hat of course is that you create a shade shadow for your face, so it does help the rays in being blocked which is essential at the hottest parts of the day.. think it is quite an individual thing, but like you say nothing is worth being ill for... I am still experimenting a bit though on what I can and can't do..:rotfl: Don't I waffle on.. sorry.
Claire X
 

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Hi Hatty,

I have the exact same problem with hats :(

I don't mind them in winter and a certain style really suits me but I can't find a summer hat that suits me at all.

I really need to, I know that but I also have the problem of anything on my head making me sweat like mad (in real summer sun of course).

I'll keep searching...

I hope you find what suits you too.

Katharine
 

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:joke::joke: Hi Hatty, problem solved......go to Mexico for your holidays and wear a sombrero!!!!!will not look out of place.:cheer2::cheer2:

Sending you hugs & Kisses
 

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Pollianna
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Hi Hatty, I think it all depends on how you percieve things. I wear hats as I like them andmy hair is so thin in winter my head gets freezin. I have a Fucia pink trilby and a sparkly multicoloured woven bakerboy cap. I have the classic flapper girl bowl hat with huge bow and a 1040's black trilby with a feather. I wear cowboy hats in the sun. I always get stares when I wear my hats. At first i thought people thought I looked on but then they started to come up to me in shops etc and tell me in shops etc, how fantastic my hat looks. I am 43 :p

They may be thinking "What a lovely hat " and your feeling "ohh my Lord I feel weird because they are looking at me cause I need to wear a hat, and they think I am weird" No one knows you need to wer the hat.

My advice hatty, if you wanna get ahead gat a hat :lol:
 

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Discussion Starter · #6 ·
Thank you! In fact, peversely, I do like my hats, and I actually suit them I think. Maybe you are right, Pollianna, that when people stare in fact they are just looking at me feeling jealous of my hat :). In fact, quite often people say 'nice hat' to me. I think my issue is not that I actually think I look funny, more that it looks like I am making a fashion statement when I am in fact making a health statement.

I suppose really the hat is symbolic for getting used to the idea of not being able to love the sun any more. I have always been fine in the sun, happy in the sun, less achy in the sun. So it's a difficult thing to accept. But I'm so fed up with feeling ill all the time, so it's worth anything to stop that.

Hey ho. I'm just not sure I know who I am any more...

xHatty
 

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I have lots of hats!

Over the last year I have discovered its best to buy at hat and then match an outfit to it, not the other way round!

My style of clothes has dramatically changed due to this.

I felt that if I just wore any old hat whatever clothes I had I stood out more as dressed in miss-matched items!

You also have to remember that people that dont wear hats and dont have any auto-immune illness are still at high risk from skin cancer of the head, ears, nose.
Even with a covering of hair skin cancer can happen!



I see having to wear a hat of some kind as a new venture in the fashion world and not a sign of the Lupus!
 

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''I suppose really the hat is symbolic for getting used to the idea of not being able to love the sun any more. I have always been fine in the sun, happy in the sun, less achy in the sun. So it's a difficult thing to accept. '''

Gosh hatty i soooo understand that, so many things i find hard because they are symbolic of my illness!

Thank you!

and lesley

where do you shop for your hats?

happy hat wearing!!!

Rachel
 

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RachelSut;541241 said:
and lesley
where do you shop for your hats?
Rachel

Wouldn't you all like to know :rolleyes:, but I will share my secret :wink2:!


I buy hats at any supermarket (store), any high street chain! I look for bargains, buy the odd expensive one or two and even kids hats (my heads small :lol:). Cowboy one's, straw hats in different colours and different rims, peaked caps, cotton hats, there are so many luckily!

Hats definately need to be worn with suitable outfit, otherwise they do look very out of place!

I love buying hats for my boys too, they look cute in cowboy style one :)!
 

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I have been trying to wear a hat when I go out. We even found some with spf protection.

My only problem is, it is usually very windy on our farm. The brim goes flying up, and the string around under my chin starts to choke me.:eek: I guess never a dull moment with me.:hehe:

I think though that hats look very stylish on people. They are probably looking and thinking. I wish I could look good as her in a hat. How does she do that?

Love,
Lyn
 

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Howdy Hatty,
As a younger male, I never wore a hat but as the SLE got worse I went searching and found one perfect hat. I now wear a replica Confederate Army Cavalry Officer's Slouch Hat. It is rivetted to my head :lol: and looks ........ really kind of odd. But as it is the only such hat most folks have ever seen, it has a certain charm. Leads to interesting conversations too.:hehe:
I hope you continue to take the photosensitivity seriously, including gloves and sunglasses.
I *never* want to go through the last sun-induced flare again!
Douglas+
[eccentric but distinguished]
 

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Pollianna
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Hatty;541235 said:
. I think my issue is not that I actually think I look funny, more that it looks like I am making a fashion statement when I am in fact making a health statement.

xHatty

Make a statement and be proud Hatty :bigsmile: I love my hats and people have come to expect me to wear them lol. I am a bit of a fashionista but we all need something :lol: In my City the nightclubs have hat nights , you can't get in without one. It's great fun xx
 

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Hi Hatty,

You've met me and one of my hats I think - I hope I didn't put you off:blush::(:blush:.

People do look - I get the odd comments about looking like the Queen (Beatrix, not Elizabeth), but hey - I think they mean it as a compliment:rolleyes:.

My favorite shop for hats is V&D. They do a soft cotton one that is good for stuffing in the bottom of a handbag for 'just in case', but also more posh ones (probably for weddings). My favorite is one with a fairly low sittting brim. It is is lilac this year:blush:. I find it stays put in wind and on the bike which is a bonus! For extra protection I drape a shawl over the hat and around my face. The market is also a good place to look. But, the best hats of all are on the UK I think - especially Monsoon:p

All the best with the new look. I think it will suit you very well8)

X C X
 

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Jen
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To be honest I've given up on what people think as most will never truly understand what we go through (Ok that is not true because I hate to use my cane around people I know but when it comes to hats that is another story). I can't go out too long in the summer without a hat and I live in the cold north so I don't go out much in the winter.

I do enjoy wearing hats and I tend to search out one's I really like, then wear a light weight linen shirt (Eddie Bauer long works great!) and a skirt. What I have issues with is giving up my flip flops! But I manage.

It is easier said than done but try not to worry about what strangers think and just focus on your loved ones.

I think we should all post photos of ourselves in our hats!
 

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Hi Hatty,

I know where you are coming from. I have worn a hat for eleven years, never go out without my hat and long sleeves.

At first I got a lot of stares but I think it was just because I was being sensitive about being about the only person wearing a hat.

I got over that pretty quickly because I have always loved hats and wore them when I was young until they went out of style. You would be surprised at the number of people who have admired my hats and my courage in wearing them in public.

Quit worrying about it and wear your hats like you mean it.

Beat wishes for better health, TAB
 

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Discussion Starter · #17 ·
Well, I am feeling very much encouraged. Hurrah for hats. Cath- yes indeed you looked lovely in a lovely white hat, and gave my daughter one which she wore for that whole summer. So maybe you started her off on a hat theme (she wears one all the time now, so she's 'just like mummy' :))
All my hats are from V&D but I'm really looking forward to going to the UK next week and spending some time in Monsoon... Why is it that we are told we look like the Queen - why not Maxima? She wears a hat too...

JenKay I love your photo! You look beautiful in your hat. I'm going to find a photo of me now, I think it's fun. Maybe we should start a Hurrah For Hats association... (maybe called Hats Are Tremendous Society - geddit)

I do find it very difficult to wear a hat on my bike, because not only does the hat impair my vision a bit but also keeps trying to fly off. And riding a bakfiets (box bike) with two giggling children in the front while trying to hold a hat on is not easy. Since I spend half my life ferrying the children around this is a bit of a problem!

I have noticed that particularly older people treat you differently in a hat, and people are more likely to stop at crossings and not barge you out of the way in queues (two relevant issues in daily life in the Netherlands). Which takes some getting used to but is nice!

It's so sunny today, and it's so hard to stay in the shade. Still, everyone is happy because it's sunny and that's great. I still don't really know how much sun I can take, so it's a learning curve... I do love silk corsage flowers and the potential for making hats different with different flowers and ribbons and stuff. I'm going to end up looking like an easter bonnet if I'm not careful...

By the way, do you wear cotton gloves in the summer? And what do you do about footwear? I've realised the rash I had on my feet last summer was probably lupus related, but how to have cool yet covered feet?

xHatty
 

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Pollianna
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Ohh yeah you look lovely in that hat. I am going to take my hat out Sat nite and have a friend take a photo and email it to me. I will take the pink trilby. Think we should all do it would be fun :hehe:
 

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The Other Illinois Tammy
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Hatty,
It is wonderfull that you have found something that works for you. It is not important what people think, say, or look at, just so you stay healthy. Remember that you are doing this to feel better and to be able to be with your children at the playground, it does not matter what people think or say. Ok well that is my how cares speech and it is a good one so please do take it to heart.
I am not sure if you know this or not but uv rays are worse when you don't see the sun so the answer would be yes you should wear your hat even with no sun. I also would not do an umbrella. I did it thinking that was a good thing and was told that the sun it coming down and reflecting of the concrete and the umbrella is trapping the ur rays and it was like laying naked in the sun he said. I wanted to also say that there is a 70 and 90 spf sunscreen available now so it is something to think about.
I am glad that you are finding a way to handle the sun and the fun.
 
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