Alopecia Awareness Month is here again

September is here again which means it’s alopecia awareness month!

This year feels very different to last. I did a lot to raise awareness last year: fun hat Friday events both here and in Dubai, I spoke at my old secondary school and posted every day on social media…but this year, for one reason or another I haven’t prepared or sorted anything.

Last year I found it almost easy to raise awareness, I didn’t mind sharing my story or taking bald selfies but this year I feel differently. Now, don’t get me wrong, I will always want to raise awareness for alopecia but my own self confidence has plummeted over recent weeks resulting in me feeling less comfortable in my bald skin than I have before.

Even the slightest glimpse of myself that I might catch in the mirror or reflection in a window makes me well up. I’m avoiding mirrors again and feel very un-accepting and feel resentful of everything my mind and body is. As always my smile masks a million thoughts, feelings and daily battles – to do with alopecia and much more and it does make me sad that I feel this way about myself because once you lose that sense of self-worth it makes everything else very difficult. However, I hadn’t really thought much about it until I was going through one of my ‘unhelpful thought pattern’ diaries with my CBT therapist where I broached this topic. They are normal, daily thoughts I have about myself but I was brave and decided to share that with her and her response was shocking to me. She got quite teary at the language I used to describe myself and crossed out some of my ‘evidence’ to support my thoughts! This is what brought everything crashing down to Earth for me, seeing someone else’s response to my ingrained self worth.

Now I’m not writing this blog for sympathy or to get nice comments – far from it. I almost didn’t post it because it because it’s so personal but I do feel that it’s an important blog to put out there because alopecia and ME/CFS doesn’t follow a linear pattern (I’m desperately avoiding the word ‘journey’ or ‘roller coaster’ here!). People say time is a healer and generally I do believe this but at the moment, a year down the line, in this circumstance it’s not true.

I am obviously writing this from my experience but my feeling about alopecia robbing me of my femininity is stronger than ever. I have always been my own worst critic but I always said my best features were my hair and eyes – and alopecia has taken that from me, to the point that if asked, I genuinely wouldn’t be able to tell you one physical part of me that I like. I wasn’t going to write about this but hey, I’ve been open in most other aspects of my life so here goes!

Weight has always been an issue for me, I am your stereotypical yoyoer. I first joined Weight Watchers when I was 16 so in reality my weight issues have been going on for over half of my life. Just before I became ill though I had had strong words with myself, took advantage of the pool on my roof, invested in a cross trainer and signed up to The Body Coach scheme. I lost just over a stone and was feeling great, I had a grip on myself and for the first time in years, felt great. But as it seems to go with me, this is when ME took a hold as did the various concoctions of drugs, many of them having the side effect of weight gain which to be perfectly honest was/is a right shitter because if you’re asleep or immobile most of the time and minimal exercise causes excruciating pain, the only result is going to be the enormous growth of Hannah Green! I know it’s happened, I can feel it, and when I dare to, I can see it. So the combination of this plus being bald, still not being able to wear make up or hats or wigs – you can see maybe why I feel so yuck – and that’s putting it lightly.

There are so many people who I’ve connected with who have ME that are experiencing the same as me in terms of drugs and weight gain and feel the cruelty as deeply as I do. It’s just an added thing to make you feel rubbish but also, as we know, weight gain will impact your joints and muscles meaning increased pain and decreased progress, it’s such a vicious cycle. I feel less and less inclined to go out, see people, do anything. I’m not giving into this by any means but I am definitely having more days where I could easily stay in bed – partly because I’m low and mainly because I am just flat-out exhausted. However, this is going to be the next area to tackle in CBT so hopefully I’ll see changes or learn coping mechanisms soon.

Haha I’ve just had a little read back – what a cheery blog this is! Seriously, I do manage to yank myself out of bed every day, put the smile on (most of the time) and get on with it because there isn’t really any other option in my eyes.

So, bringing this full circle, this year I feel less confident in my alopecia skin, I would feel a fraud using hashtags like #baldisbeautiful because for me, right now, it’s not true. Of course I will still be doing little bits and bobs to raise awareness however, in a few months I will be able to share something very exciting with you that I’ve been working on and that will be my contribution to this years alopecia awareness.

So, my little reminder to myself and to other people is to remember that everyone is fighting a battle that may not be visible so don’t pass judgement. Just be kind.

Happy alopecia awareness month.

#hairlesshannah

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September round up!

I have sat and thought for such a long time about how to start this post. It’s not often I get speechless but after the events of this month I have been lost for words. BUT, have no fear, I am going to give it my best shot!

This was the first year that Alopecia Awareness Month even came onto my radar. I don’t know anyone with alopecia and until this year I had hair so why would I have been aware? But, I decided that this year, because I have been affected by alopecia and now totally understand the effect it has on people, I needed to help Alopecia UK and spread as much awareness as possible. I said from the start that it wasn’t about raising money per say, it was all about awareness. Alopecia is so unknown to so many people but is an illness that needs to be talked about more openly and honestly.

Each day I posted a photo on my social media linked to alopecia, nothing held back, some funny insights, some informative and some showing the raw emotion that alopecia can bring. That was my way of helping to spread some awareness. I had mentioned in previous blogs that some people may want to get involved but I didn’t expect people to get so on board!

Firstly, mum and her amazing aqua ladies had a Sassy Hat Saturday and all wore fun hats in the pool for their aqua lesson! The video footage was brilliant and they also, so generously raised over £100 for the charity. They are such a brilliant bunch of ladies, so supportive of me but also to mum which I am ever so grateful for. I know that many of them have been a listening ear and given many needed cuddles since I’ve become ill.  Mum has been a pillar of strength to me and has rarely let her true feelings come out because she feels she needs to be strong for me, I wish she wouldn’t but I know why she does. So, thank you aqua ladies – you are stars!

Dad also organised a Fun Hat Friday in his office and once again, everyone participated with enthusiasm and also amazingly raised £60 along the way. As with some of the aqua ladies, many of dads colleagues I’ve never met, yet still they joined in and helped raise awareness and money, thank you, you’re a brilliant bunch of people.

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Throughout the month I wanted my blog posts to be a little different. You’ve heard about my experience with alopecia and will do in the future. I wanted to offer a new perspective which is why I asked mum and dad to guest blog and also a friend, who for personal reasons  wanted to stay anonymous.  Now, I know for all three, writing the blogs was a difficult process. I think I’ve become used to writing my blog now and not being afraid to hold back and be truly honest, for me it’s therapeutic. I no longer think about how many people will read it and what they will know about me, but for people who haven’t done that before, I can understand why it was a bit daunting. The anonymous blog, as I’m sure you’ll agree, gave a different perspective on alopecia, it was someone else’s story and it was a very raw and honest piece. I must admit, when I read both mum and dads contributions, I cried. I think we all know deep down, how each other have felt over the past year, but seeing it in black and white, reading how what I’m going through is deeply affecting my two best friends, well, it was hard. I’ve tried to be brave and positive, not just for me but for them too, and reading how hard it is for them was heartbreaking. However, luckily, that’s what families are for and I am just so blessed to have the family I do.

This month I also did something I never thought I’d be able to do. I went back to my old secondary school and gave a talk in front of the whole sixth form about alopecia. I’ve stayed in touch, well no, that sounds too basic..I’ve become great friends with an ex teacher of mine, Nick, and she took on the mammoth job of organising a whole sixth form alopecia awareness day at school. There was no pressure for me to go in, I’d made power points that could be used but I just thought, you know what, grow a pair Hannah.  All these people are organising things for Alopecia UK but in the main, for you, because you’re their friend.

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It was so bizarre going back to school. So much had changed, including the name. We walked over to the brand new sixth form block which was a world away from the hut we used to have! I felt so very nervous but the students were amazing, they seemed interested in what I had to say and gave such a warm reception. It’s not often I would ever say this, but on this occasion I did feel proud of myself. I’d stood, bald, in front of a whole room of people and talked about my story. I must admit, I was digging my nails into my hand at one point, It was like an out-of-body experience. I’d made the power point but when I clicked onto the next slide and saw, projected onto a huge screen, the photo mapping the progress of my alopecia, it hit me for the first time – that’s me, that’s my hair story and here I am now with no hair. I even said to the students – I stand out because, here I am, the only bald person in the room, and that hit home hard and I felt overwhelmingly sad. But then, as I left, and after receiving messages from Nick over the following days about feedback the students were giving her, I felt proud. Out of this whole yucky scenario, I was able to do some good.

Then, what can I say, on Thursday 29th September, it seemed like alopecia took over a vast majority of various parts of the world! My gorgeous friend Carly, had organised a Fun Hat Thursday at my school in Dubai. To put this into context, each year group from nursery to Year 6 have 14 classes, most with 26-30 children in. It took a lot of organising from not just Carly but many other of my lovely friends and colleagues.  I guess I hadn’t really thought too much about it until the messages started to come in. The posters around school included my has tag #hairlesshannah and I started to get new comments on my blog and Instagram that provided me with so much sunshine I can’t even explain.

Then came the photos and videos – wow! Seeing literally hundreds of children and staff in their crazy hats – some even with balloons with Hannah written on them, one with a note saying – get well soon Hannah – it was just indescribable. To know that nearly 3500 people in Dubai were being educated about alopecia and thinking about me – what can I say? Just so moving. I had a text from one friend saying that in a lesson the children were talking about animals and they had a picture of a bald eagle on the screen. The teacher had asked about why they thought this particular bird had no feathers on it’s head. The response from a little girl was simply priceless – “Maybe it has alopecia!” I mean, come on!! How amazing is that?! She’d listened and learnt about alopecia and linked it into her following learning!

However, I think some younger children got confused and made Carly slightly excited that I’d arrived for a surprise visit! A guest speaker who also has alopecia went into school to do a talk and some of the younger children obviously saw her. They then ran to Carly – “Miss Dean, Miss Dean, Miss Green is in school!” Carly, a little confused, explained that, as she’d told them, I was in the UK, but they were still convinced. It wasn’t until Carly was told they’d seen the visitor that she put two and two together – it’s just made me chuckle that whenever these little ones see any bald women for a little while, they will be convinced it’s me!

When the communication from Dubai started to die down, and my tears of happiness had started to subside, then came the influx from Nick and all the work they’d done that day also! Fun hat photos were amazing and the cake and sweet sale they did raised £148 for Alopecia UK. They also involved the lower school and did a, decorate the egg head activity which looked like brilliant fun. All that organisation had paid off. It’s just crazy to think how many students both in the UK and Dubai have now been educated about alopecia – now that’s what a call spreading awareness!

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Then, to finish things off, on the last day of the month, I held a Mad Hatters Tea party. It was lots of fun, with games organised by my gorgeous friend Jen. We played musical hats, heads or tails and then finished with a team game of ‘pimp my weave!’ One team member had to don a swimming cap whilst the other team mates, in 5 minutes, had to pimp it out! It was messy, glorious fun with hilarious outcomes…and my team won! Again, so much awareness made and £55 raised for the charity, fab.

I want to finish by mentioning Megan, a beautiful little girl who I taught in Dubai. I became friends with the family and have stayed in touch as we are now all back in the UK. I couldn’t believe it when I opened Facebook on the 3rd of September to see photos of Megan having her hair cut short so that she could donate her hair to The Little Princess Trust. For such a young girl to do something like that is what I call inspiration. She was so selfless in that act, and some lucky little girl will now be able to have a human hair wig because of Megan’s generosity and kind heart. I’ve said it once but I’ll say it again, the Hart family are a bunch of truly genuine, caring, wonderful people and they should be very proud of Megan because I know I am.

I just cannot say thank you enough to every single person who has shared my story, talked about alopecia, done an event or raised some money. It means more than you will ever know and has lifted my spirits no end. It’s helped me become more confident in my new skin, it’s helped me start to like myself again, it’s helped me realise that hair or no hair, I am still me, I still have friends and family like no one else – and that is priceless.

So, although awareness month is over, don’t stop sharing the blog and talking about alopecia.

Thank you again to everyone who has supported me this month – you are all super stars.

Lots of love and sunshine (may as well finish the gushing blog with some more cheese!)

#hairlesshannah

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Guest post from Dad

It may may be at the eleventh hour on the last day of alopecia awareness month BUT dads emailed me over his blog. After what a has been such a special, fun evening, I didn’t expect to be crying just before bed….have a read and you’ll see what I mean.

#hairlesshannah

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“I want to cut the rest of my hair off – will you do it?” This is not a question I ever thought I would be asked – or have to answer. But this was not a spur of the moment question, it had been thought about for a long time and, as Hannah has done so many times over the last year, she was making the best of a very bad job. She had investigated the Little Princess Trust and found out that her hair could be used for the benefit of those less fortunate than herself. Remarkable.

So, after employing delaying tactics by asking if she’d prefer me to ask the local barber, there we were, in the kitchen, with scissors, a beard trimmer and an electric razor – and a ruler as we had to make sure that the hair we cut was at least 17cm long!

Making the first cut was heart breaking, just knowing what Hannah’s hair meant to her and not knowing what the final result would look like. I know it was hard for me, so goodness knows what it was like for Hannah – hearing the scissors and seeing great clumps of hair coming off. And then for that to be followed with a beard trimmer to get the remaining hair short enough to finish with an electric razor. It probably only took 15 minutes but it must have felt like hours.

We all meant it when we said that she has a lovely shaped head – but how little that could help. Even now, 9 months later, we are used to seeing Hannah without hair – she puts a very brave face on, but we know how much she suffers each time she look in the mirror.

When your children are little and suffer illnesses every parent wishes they could be in their place to take the pain for them. That feeling doesn’t lessen as they grow older – if I could lose my hair ( and there’s less of it by the month!) for hers to grow back, I would gladly do it.

They say what doesn’t kill you, makes you stronger. I’m sure Hannah doesn’t see it like that at the moment, but she will get better and she will be stronger for the experience. What she has done to raise awareness about alopecia whilst being far from fighting fit herself, has been incredible and is just one indication of her inner strength, and me and we, her family, could not be more proud of this remarkable young lady.

All my love, Dad X

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Alopecia Q&A

Since my hair started to fall out and being diagnosed with alopecia, I have been asked many questions. Questions that to start with, I had no idea of the answer and to be honest, there are still some where I need to research the answer. But I thought, with it being alopecia awareness month, I would try my best to answer some questions that people have sent to me or that I have been asked in the past. I hope it’s insightful but I would like to point out here that these are the answers I give and from what I have researched. I have answered them to the best of my ability and knowledge due to my personal experience.

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What is alopecia?

Alopecia is the medical term for hair loss. It is an auto immune disease where your body is tricked into thinking hair follicles are foreign bodies and therefore get rid of them.

There are many types of alopecia but the ones you will hear about most are areata, totalis and universals. Alopecia areata is when you lose small patches or one more extensive patch on your head, alopecia totalis is total loss of hair on the scalp and alopecia universalis is total loss of hair all over the body.

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Who can be affected by alopecia?

Men, women and children of any age can get alopecia.

Is it hereditary?

It may be hereditary but there is no proof, chances  are slim with possibly only one in five cases being linked to heritage.

Is alopecia caused by stress?

Again, stress can be a cause but there is not enough evidence to prove the connection. It is more likely that stress is the trigger to an underlying autoimmune problem which can then lead to hair loss.

Will your hair grow back?

You can never predict when or how much will fall out and equally you can’t predict if and when it will grow back.

Do you feel ill because of alopecia?

Alopecia doesn’t make you feel sick and you can’t catch it but you do have to be careful when in the sun and cover your head with sunscreen or wear a hat. If you lose your eyelashes your eyes become much more sensitive so sunglasses often need to be worn. I have also read about people with alopecia universalis who have lost their nose hair so suffer more with hay fever and when they have a cold, their nose runs much more easily.

I can only speak for myself here when I say that although it hasn’t made me feel ill, it has affected me mentally and emotionally.  It has totally altered my view of myself, it’s robbed me of my confidence and my ability to accept who I am as a woman.

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Is hair loss painful?

Your scalp can feel tingly and itchy before the hair falls out but it isn’t painful.

Why don’t you wear a wig?

In my case it’s for two reasons.

1: because of other problems, my head and scalp is extremely sensitive with constant pins and needles which means that I can’t have anything on my head because it causes so much discomfort.

2: I’m not totally sure how I feel about wearing a wig.  The few times I did wear Brian or Adams (my wigs’ names!) I found it even more distressing having to take them off as it reminded me that it isn’t my own hair, it’s a mask, a costume that doesn’t belong to me. Wearing turbans or hats is much more “normal” as you’d take them off at the end of the day anyway. It’s totally personal to each person, but as long as you feel comfortable, that’s all that matters. Never do anything to please others, just because wearing a wig may put them more at ease, it doesn’t mean you have to.

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Does the heat affect you?

YES! It makes my head very itchy and painful – never forget your suncream!

Is there a plus side to being bald?

This is an interesting one. In some ways it depends on the day and how I’m feeling about the situation! Anything I write here isn’t really a plus side because really, I’d love to be in any of this predicaments but…. I get to save money on shampoo, hair products and hair cuts BUT I’m a woman and I miss all of these things. I love having my hair done and would give anything to be able to book an appointment and be made to feel nice. I try to find humour in situations where I can, so when friends are commenting on how annoying the wind is because it will mess up their hair, I have a little chuckle because, well, I don’t have that problem! Someone once said to me, “at least you don’t have to deal with bad hair days anymore!”…really?! Although my days are ‘no hair days’ I kind of consider them bad hair days every day too.

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Is there a cure?

At the moment, no. There are many treatments, some of which I’ve tried, topical steroid cream, minoxidil, which comes in mens regaine treatment, cortisone injections, light treatments and various other ointments, lotions and potions. Each treatment has different outcomes for different people. For me, none have worked. It’s worth trying things but there is never a guarantee.

How easy is it to tie a head scarf or turban?

For me.. not easy at all! I am useless and know that I should really watch a few more YouTube tutorials and spend time practising! But there are so many amazing websites that sell easy tie turbans, they are little caps with two strips of material that you just have to twist and tie or even better, all done for you and you put it on like a hat…my kind of turban for sure!

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Do you have cancer?

This is such a tough one. SO many random strangers have offered me their sympathy when I’ve been out and asked how my treatments going and I always feel guilty about telling them, actually, I “only” have alopecia. It’s interesting then how quickly they change their tone and walk off. But I will never forget the conversation I had with a lady when I was out who had asked me about the turban I was wearing. I would never had guessed she was wearing a wig, but she told me she’d just finished her latest chemo round and wanted something lighter than a wig. When I told her I “only” had alopecia, she gave me a huge hug and said she was sorry for assuming and that I should never feel bad for saying I didn’t have cancer and just had alopecia. She said that hair loss had been the worst part about cancer for her and that she felt for me because in her case, she knew at some point her hair would return but that for me, there was that element of uncertainty. She was a wonderful woman, who finished our chat by saying that, hair or no hair, we were both amazing, kick ass women. That chat meant so much.

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Do you mind me asking why you choose to shave your head? (not asked by anyone I know – always strangers!)

Yes I do, F**k off! (that’s what I’d like to say!) I mean, how often do you stop a stranger and say, “do you mind me asking why you choose to be in a wheelchair?” or “why do you choose to dye your hair pink?” NO! It’s rude! Although shaving your head may be a choice for some people, this is NOT a choice for me. I don’t like it but that’s how it is! I read an amazing post somewhere the other week, on the same day I’d been asked this question in Holland & Barret and did my usual response of “oh I have alopecia” whilst blowing a gasket inside! The woman posted that she’d been asked this question and out of nowhere, she just responded, “only if you don’t mind me asking why you choose to have such a shit hair cut?!” PURE BRILLIANCE!!!!! I just wonder if I’d ever have the guts to say it to someone!

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Why don’t you wear your Bob Marley hat?

Because Carly, I am saving that beauty for when I come to visit and arrive at the airport!

So, that’s the end of my alopecia Q&A blog, I hope you’ve learnt something from it and if you have any other questions, just ask away!

One week left of Alopecia Awareness Month so keep spreading awareness, let me know if you do anything and don’t forget to use the hash tags #hairlesshannah and #alopeciaawarenessmonth

Have a lovely weekend.

#hairlesshannah

 

 

 

Guest blog 2 – a mum’s perspective

The last eleven months have been so tough and I have always been conscious of how it has impacted my family. To go from having an ‘empty nest’ to having all four of us at home again, one stressed NQT, and one ill, unemployed child can’t be easy. However, not once have they complained, not once made me feel like a burden, not once have they allowed me to feel alone in this horrendous ordeal.

Parents have this unwritten rule that they have to be the strong ones and I can only imagine what it must be like to see one of your own children fall ill, lose their hair and identity and become isolated from all they know and love. I feel terribly lucky that although we have a relatively small immediate family, we are blessed with such a large extended one.  Therefore, I know that mum, dad and maybe Jack (!) have people to talk to about what’s happened and offload their worries and upset and be comforted when it’s needed.

I asked mum, dad and Jack if they’d like to write a post from a families perspective of how alopecia has impacted their lives and I could see the trepidation in their eyes. However, mum has done it (no pressure boys!) and although it made me cry, it was a relief to actually read what I probably already knew about how she has felt about everything. So, here it is, guest post #2 from my best friend in the world.

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“Typical of our daughter, she didn’t tell us how poorly she was because she didn’t want to spoil our holiday in Madeira: that was last October. When she came home we could see how distressed she was by her hair loss and really believed that a few weeks’ rest and TLC would restore her to full health and she would be able to return to Dubai at the very latest by January.

How wrong could we have been? During the weeks that followed, more clumps of hair fell out: her eyebrows and her eyelashes followed soon after. With some trepidation we visited a recommended salon in Notting Hill and bought the first hairpiece. Standing there watching Hannah have it put on and styled seemed such an alien thing to do but we believed it would help to restore some of her confidence: wrong again. I had to come to understand that for Hannah, not having her own hair helped to rob her of her own identity and she just felt ‘all wrong.’ I hated the situation then and I hate it even more now, eleven months on.

As laudable as it was for Hannah to have done the research and measure the longest parts of her remaining hair so that it could be donated to the Little Princess Trust that makes hair pieces for children who suffer from cancer, I cannot begin to tell you the size of the boulder that lodged in my throat when Richard, as requested by Hannah, shaved the remainder of her beautiful hair off. It seemed such an abominable and sacrilegious act: necessary for all of the right reasons but just plain wrong.

During the weeks and months that followed, what an irony that the constant pins and needles in her face and scalp even robbed her of the privilege of even wearing the hair piece. Seeing her struggle downstairs at times as a consequence of the muscular pain she also has to endure, is almost too much to bear at times. Normal family times sitting and watching the television have also had to be adapted as noise and light intolerance mean we watch in semi-darkness and often have to have the sub-titles on – if I’m honest we were doing that more often anyway on account of our own hearing problems so that hasn’t bee too much of an issue!

It has never ceased to amaze us that for the most part, Hannah has kept so positive and focused on all of the good things in life: forever thinking of other people and their needs, ever aware and concerned about others and their problems.

She was the one who organised our joint birthday party in July – the guest list; the play-list; the decorations – not to mention the help she gave in actually baking the cakes – no mean task I can tell you when your hands are swollen with muscle pain. She was the one who contacted so many of my past colleagues and pupils in order to collate the treasured memory book which she presented me with when I retired and of course, more recently she co-ordinated the biggest surprise of all, the arrival of my much loved brother Chris who travelled from Toronto to celebrate my birthday in Swansea – get my gist? Forever putting others first: what a star.

Thank goodness for the amazing support we have had in the form of friends and family and most notably the ones who give up their own time to give Hannah reflexology and reiki – words can never express our gratitude to them. When I go to my aqua class, I don’t talk about Hannah’s condition unless I’m asked as when I get into the water, I switch off for an hour or so and let everything drift away. But I do know who I can turn to if I need to and that is priceless knowledge. Unlike me, I haven’t given in to venting my own full emotions yet – I know that I have to keep strong and that’s what us mums do isn’t it?

We have had our laughs along the way, as many of you will know from reading Hannah’s insightful and informative blogs. But there is one niggle I have and I’m going to tell you what it is. It really doesn’t help when occasionally people say ‘it could be worse.’ We know that. We do have hope and we do believe Hannah will get better. We also know that there are many more people in this world who have the cruellest of situations to be dealing with and some of them haven’t even got the close family and friends that we do but – well – just saying!

Imminently, Hannah will see a specialist at King’s – we are hopeful that he will be able to point us in the right direction in terms of a diagnosis and recovery: it is all so unfair. At thirty years’ old she should be out there continuing her amazing career: I often think of all the children who are missing out because they haven’t got ‘Miss Green’ and all of her loving care and skills in their daily lives. She should be going out with her friends and not worrying about being too tired to do so. I hate what this condition is doing to her: hate is such an emotive term but this is how I feel. And I make no apology for it.”

Cath Green

Thanks for reading…share the post and keep the #awareness going.

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#hairlesshannah

 

My first guest post for #alopeciaawarenessmonth

So, September is upon us which means:  Alopecia Awareness Month.

I have been overwhelmed by the support people are showing me but I am saving all of the fundraising/awareness raising that’s taking part for a blog at the end of the month!

I’ve thought a lot about what I’d like to post during the month and wanted to do something different. I’ve written extensively about my experience with alopecia so I thought it would be interesting to have some guest posts from others who are living with the disease or those who don’t have the disease but have friends or family members that do.

Talking about our feelings and experiences can be very hard, but knowing there are people out there who can empathise, support and help, makes all the difference. So, here it is, I am excited to publish my first guest post by someone who also lives with alopecia.  They have taken the brave step to writing about their experiences after suffering with the disease for ten years.

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“My relationship with alopecia began when I was twenty and found a small coin shaped patch at the back of my head. At that point I wasn’t too worried and after being reassured by the doctor that it would go away, I began to forget about it. However, it didn’t go away.

Gradually over the course of a year I lost a quarter of my hair including some of my eyebrow hair. At that point I went to a dermatologist who confirmed that it was alopecia, that the cause was autoimmune and that it was unlikely to come back. Following the appointment I realised that I was going to need a wig (I hate the word) and this whole topic caused a lot of friction at home. This was mainly because I was mourning the loss of my hair and I wasn’t ready to accept that it would never grow back but also because of my parent’s concerns and sadness that this was happening to me.

Then came the hard part of choosing a wig that I could wear and not feel like I was going to a fancy dress party! For me it was important that my wig looked natural, that it was inconspicuous. I wanted to blend in and not to be stared at.
After finding a wig that I was comfortable with I began to feel more relaxed about my alopecia and no longer self-conscious about going outside in case a gust of wind exposed my bald spots! When I was twenty-one my hair began to grow back; beginning first with my eyebrows and then my hair. It grew back to the point that I no longer had to wear my wig but I did still have some patches where hair would not grow. Inevitably, my hair began to fall out again and this, on reflection, was the hardest point in my relationship with alopecia.

I began to feel very self-conscious about going out again, I lost my confidence and just felt generally miserable. I had to go back to wearing a wig and it took all of my inner strength and bravery for me to accept that I was back to square one.

For the next two years, with the help of my wig, I continued my life with regular normality. My hair would occasionally grow back in small patches and then fall out again but because it was under my wig I didn’t really care. It was only after a particularly stressful time at work when my eyelashes began to fall out, that I began to feel the impact of alopecia once more. Watching my eyelashes come out one by one and knowing that they probably wouldn’t come back was heartbreaking. Alopecia was taking the last thing that I had, my eyelashes. It seems silly but they were the last hairs that I had that were real, that were mine.
Still, I didn’t let it beat me. I looked into having eyelash extensions and semi permanent make-up. I settled on semi permanent make-up and I have since had both my eyebrows and eyeliner tattooed so that I no longer looked like an alien in the mirror! A big part of alopecia is accepting the person that you see looking back at you in the mirror. Most of the time I do accept what I see and I look at myself without my hair and don’t cry, but sometimes I do wonder what I would look like with my own hair again. Looking at old photographs of myself does make me feel sad and I do miss what I had.

I often wonder how the old me in the photograph, with her own hair, would have reacted if she knew what was to come. If I could speak to myself before alopecia I would tell myself that it will be ok, that I will be ok and that alopecia shouldn’t stop me from living my life.

There are certain things that I feel I can’t do like go swimming and put my head under the water (my eyelashes fall off!) but that’s a small price to pay to be able to continue to live my life with some degree of normality.
Alopecia is a part of me and although it has changed me as a person, I don’t want it to define me. I accept that I will most likely always have it and I’m not prepared to let it stop me going out and living my life.”

Anonymous

 

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I read this post and found I related to so many of the issues raised. Like I said, knowing that there is an opportunity to network and talk to others who truly understand is a huge relief. So I’d like to thank the author for being brave enough to share their story and experiences of living with alopecia.

Remember to take photos and send them to me if you do any awareness/money raising activities – Fun Hat Friday is an easy to organise event and you’ll have a laugh along the way! I have created a primary and secondary Power Point if you’d like to do something in schools, just contact me and I’ll be happy to ping it over.

Please share the blog and let’s make sure #alopeciaawarenessmonth educates more people on a disease that impacts on so many people.

 

#hairlesshannah

xx

 

10 things to say & not to say to someone with a hidden illness/alopecia

Over the past ten months I have encountered many helpful and unhelpful comments from people.  On the whole, I am fully aware that they either don’t know what to say, they want to help but don’t know how but have my best intentions at heart. However, it never fails to shock me at how many people lack empathy or the ability to engage their mind before they open their mouth!

So, here are my handy hints and tips for what to say and not to say to someone with a hidden illness:

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Things NOT to say.

  1. I wish I had time to sleep as much as you do.

No you don’t. This isn’t a cheeky little Sunday lay in that we all crave after a long week at work or a fun night out clubbing. This isn’t a choice, it’s a necessity in order to cope with even a low amount of exertion. Believe me, I miss the days I was worn out from work or fun – you don’t want to experience this level of fatigue so don’t wish it on yourself!

2. I wish I could have ten months off work to just chill out and do nothing.

Really? Remember, if you’re not working you’re not earning. You lose your independence because you need to rely on others to help you out financially and that worry of not having any money or owing money is simply horrendous. Also, if you don’t work, you lose your purpose in life, you don’t have any responsibility and that sucks – big time.

3. It must be nice to not have any commitments.

It’s only human to look forward to a few days of no commitments and have some ‘you’ time but when that lingers for month after month, it really isn’t fun. To have to cancel plans and let people down is soul-destroying and isolating.  Don’t take for granted being able to plan things, see people and live life to the full.

   4. You don’t look like you’re sick.

If I didn’t have Alopecia, on the whole, I would look ‘fine.’ That is even more reason to listen to what someone tells you because it will deepen your understanding or take note of what isn’t being said because sometimes that will speak volumes. If I am quiet, I’m not in a mood – well, most of the time! – I am probably just quietly trying to manage my pain and resist the urge to scratch my face and head! The majority of my illness is hidden and I have become quite a good actress…just take time to understand that looks can be deceiving.

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 5. Try and push yourself through it, help yourself.

I am helping myself every single day. I pace myself, cancel plans, wear ear plugs all to help myself. It may not fit into your life or day but that’s why you have to be empathetic and understand, even though I know it must be frustrating at times.

6. I have a friend who tried **** and it cured them, you should try it too….

Believe me when I say I have and continue to try anything and everything but ten months in, I really don’t need to hear that your uncle’s best friends daughter rubbed vaseline into her joints for three weeks and he was magically cured! Everyone is different and although these weird and whacky treatments are fab, I don’t really want to hear it. I’m honestly not being ungrateful here, sometimes people have spent a long time researching their suggestions for me and these ones I always follow-up and look into, it’s just the odd ones that get me.

7. Just be patient, you will get there in the end.

I know. You don’t need to tell me.

8. You should say yes more and get out, it will help.

How I would love to do this. When I can, I will but when I can’t I don’t. It’s not because I don’t want to, it’s because I know I don’t have the spoons.

9. You’re too young to be this ill.

Age doesn’t factor into illness. As many people will know, if you’re ill, you’re ill. There’s no rhyme or reason to it, it just happens, so don’t comment on age.

10. You look so much better than I expected you to look.

Thanks…..I think. Does this mean I actually look awful but less awful than you’d imagined?! I know it’s a nice thing in reality but, you know what, I really don’t feel great and remember, it’s all hidden so just because I don’t look as pale and horrendous, this doesn’t match what I’m still dealing with.

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Things you SHOULD say:

Simple really, I believe you. I’m here for you.

Basically, It’s just nice to know your friends and family trust and believe what you are saying to them even though that can’t physically see it. It’s nice to know they’ve looked into your illness so have a deeper understanding of what you’re coping with without having to bombard me with questions. It’s nice to be involved in conversations that don’t revolve around illness, I like to hear gossip, news, problems and laugh – anything to take my mind of things is always lovely.

Thankfully, this is a quality that all the people in my life hold. If anything, being this ill has made me see who my true friends are and I can tell you now, I am one lucky girl.

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Things NOT to say to someone with alopecia:

  1. Being bald really suits you!

This is something you say to a friend when they’ve been to the hairdresser and had a change in style or colour. I haven’t been to the hairdresser and asked for a buzz cut. It’s not a choice.I don’t want to be bald, I don’t want it to suit me.

2. Thank goodness you’ve got a lovely shaped head.

Yes, it is a bonus that I have a nice shaped head but what could I do if I didn’t?! Would it make me repulsive? Like suggested by a newspaper recently – would it put people off their breakfast? No. Under your hair, you all have a bald head it’s just that you can see mine and I really don’t want any more attention drawn to it than necessary.

3. It must be so much fun to be able to experiment with wigs and scarves.

This is so well-meaning by anyone who says it, it’s a positive view on what they know is a tough situation. But for me, at the moment, no. It’s partly down to the pins and needles I have constantly, I can’t bear anything being on my head at the moment. Maybe, hopefully one day, I will feel happier wearing wigs but for me it just reminded me of what I’d lost. Worrying about it slipping, blowing away and having to remove it at the end of the day continued the trauma for me. If I’m just bald day in, day out, I don’t have to remove anything, I don’t have a reminder of what I don’t have anymore. I admire the wonderful women I follow on Instagram and on the Alopecia UK site because they seem to have fun trying and styling different wigs and I hope that one day that can be me. We shall see. As for scarves, if you know me at all, you’ll know how awful I was at styling my own hair let alone tying knots and twisting material and making it stay! Maybe practice makes perfect but again, not for me right now.

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4. Being bald must make getting ready so much quicker – you’re lucky!

Funnily enough I miss washing, drying, straightening, playing with my hair. Yes, I can get ready much quicker without all these processes but it’s not my choice and if you took time to think about how it would make you feel, maybe you wouldn’t say it.

5. You must save so much money not having any hair.

Yes, I do but I miss going to have my hair done, trying new products out…I’d trade you any day!

6. I’m having such a bad hair day!

This one always makes me chuckle. I actually don’t mind people talking to me about this because it’s a normal conversation for girls to have. I guess I don’t have bad hair days anymore, I just have no hair days! Some days I cope with my Alopecia better than others and can laugh and joke about it but most days I can’t stand it.  However, that doesn’t mean I don’t like to hear the moans and groans about bad cuts and colours or how the wind and rain is annoying – unless I’m having a bad day (which isn’t your fault) I love these moments.

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7. It WILL grow back.

Unfortunately, as lovely and hopeful as this comment is, we just don’t know. Many people’s hair does return but many peoples doesn’t. There is no cure and there is no plotted journey for hair loss. So although it’s a positive comment, in a way, it gives false hope so maybe just don’t say it.

8. It’s only hair.

As with so many of the above, just spend a moment thinking about how you would feel if one day you had beautiful hair and a few weeks later it was all gone. It’s not just hair. It’s part of you, it forms part of your personality. It changes how you feel about yourself and affects your confidence more than you can imagine.

What you SHOULD say and do:

Laugh at hair loss jokes and give cuddles when it’s too tough to find the strength to be positive about it all. Be honest when a wig or scarf looks utterly ridiculous but also comment on how lovely and beautiful we look when we get it right!

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And remember, September is Alopecia Awareness month so get your Fun Hat Fridays sorted and get in touch if you want me to come and do a class talk etc. Thank you so much for all your continued support, I really am lucky to have the support system I have.

Fun Hat Fridays

#hairlesshannah

x