Hello all! So today’s little blog is just to say a huge thank you to everyone who came to and supported our quiz night last week. We were raising money for Alopecia UK and for our neighbour Paul who is raising money for a new motorised wheelchair and further treatment for his brain tumour.
We raised an incredible £1138.30 which is way beyond what I expected from the night. Both recipients will be over the moon with the donations, I’ve given Paul his half already and he was thrilled and wanted to thank everyone for their generosity.
The support given from my local community was also amazing, the raffle prizes donated definitely helped with the sale of raffle tickets – the palava of running out of tickets was a nightmare though – whoever heard of pulling out coloured post it notes for a raffle?! Cathy you were a total star for dashing off to Tesco and being creative in solving the problem – thank you. I wanted to give the local businesses a shout out because more often than not these days, local communities get a lot of stick for not supporting people but they went above and beyond and I feel very lucky to live where I do.
I really hope everyone had a good night, I will never forget coming round from a little nap in the side room to mum rapping lyrics from a 5ive song – it shouldn’t have surprised me really!! Deborah and Jen were total superstars for being in cool, calm control of keeping track of scoring and many other jobs – thank you lovely ladies. And then there’s mum and dad – I couldn’t have done it without you, I know I couldn’t do as much as I wanted to in order to help, so as always, you were superb.
Here’s to continuing with raising awareness for Alopecia UK and supporting friends when they need it most. Have a fab week.
It’s unusual for me to write an unplanned blog but today my fingers just needed to let loose on the keyboard to get out of my system the hate, hurt, anger and upset that’s setting in. Even though I posted yesterday, I hope you don’t mind this unscheduled rant! It’s all too easy on social media to portray that life is peachy but sometimes we need to be honest because we can even trick ourselves into really believing the “I’m fine” business. Although that’s the path I’m happier to tread for the majority of the time, sometimes I find myself in a space that is so catastrophically not fine, that I can only be true to myself.
This blog is aimed at anyone in a job that holds any kind of human interaction whether that be face to face, via email or over the phone. It’s a blog to remind people that whoever you are interacting with, they are human. They have feelings. They may have their own problems that are hidden to you. I’m not particularly religious but at this moment in time, all I keep thinking is – treat others as you’d wish to be treated.
Earlier in the week I finally experienced my first decent phone-call with someone at the DWP. She didn’t talk to me as if I was a piece of dirt on her shoe, she didn’t judge me, she didn’t tut at me or make me hang up the phone and crumble into tears. At the end of the call I asked for her name and thanked her for allowing me to ask the questions I needed to without being made to feel belittled. Unfortunately, although she was pleased to be thanked, she said that it’s all too often she hears that from people and assured me that the position both she and her colleagues hold is not one of seniority, they are there to help and reassure people in order to ensure they get the help and benefits they need and are entitled to. How sad it’s taken four months for me to finally be treated this way.
And this leads me on to other experiences I faced this week. A letter arrived last weekend from the dermatology department, I’d had to reschedule an appointment in early January as it clashed with a neurology appointment but they had obviously overlooked that. Therefore this letter outlined the results of my skin biopsy and recent full blood tests. Luckily – well not really for me – most came back clear, but what if this hadn’t been the case? I would have found out via letter? And then I came to the last paragraph; a short, swift sentence saying they agreed with the diagnosis by my GP, that my ‘hair loss’ was linked to that and therefore they had referred me to a psychologist. I’m sorry, but had you forgotten that I am a human here? This is my life, my hair, my situation? And yet you are bluntly wiping your hands of me because, why? My case is complex and might take extra time and money? Why am I not worth that? But anyway, after another cry and feelings of deep sorrow and frustration, I dusted myself off, plastered on my “I’m fine” face and focussed on the fact I could discuss it on Thursday at my next appointment.
Fast forward to Thursday. It took a lot for me to get up to Kings for 9.30am yet ten o’clock rolls round and still we haven’t been called in so I approach the desk to enquire about how long the waiting time will be. It’s then that I am told the specialist I am due to see is on annual leave and the stand in Dr is not yet here and they can’t get hold of him. I’m sorry but, why were we not a) informed she was on leave prior to today or b) told when we arrived that this was the case? It doesn’t take a lot at the moment to make me cry because although I manage to keep it in most of the time, I feel like I’m constantly on the edge. So there I am walking back to my parents in a full waiting room, crying. All because my doctor isn’t there – stupid but it tipped me over the edge. Does no one actually care about me? I had a text the day before my appointment reminding me that a missed appointment costs the NHS £160 but hey, if a patient is stood up, never mind, come back another time right? No harm done!
To be fair, the receptionists were amazing and it really wasn’t their fault. After they did some calling around we were told the stand in Dr had been on nights and had apparently cancelled his day appointments but the message hadn’t got through. The next available appointment would be March. But at that point, eagle-eyed mum saw the senior dermatologist come in and asked the receptionist if she could see if he would see us. Long and short is, fair enough, he did. But I wish in many ways he hadn’t.
He is the lead specialist in the dermatology department so you would hope that his bedside manner was outstanding eh? I understand and give some leeway to the fact he wasn’t expecting to see me but that doesn’t excuse the next ten minutes in my eyes. He didn’t have any notes so was obviously working from memory from their meeting after the case conference but he proceeded to tell me that actually their diagnosis was that my hair loss was more than likely untreatable and incurable. Bang, just like that. I cried and he just commented, “no tissues – sorry, NHS.” No worries that I’ve just told a 30-year-old girl that her hair may never grow back, no biggie, you can cope with that.
After I gathered myself I managed to question him, I was angry and in all honestly did not trust what he was saying. In the letter I received, statements had been made about other things which he then did explain to some extent but also tried to wiggle out of. He also stated that dermatology don’t really know much about hair loss and alopecia, he shrugged his shoulders a lot and leant so far back on his wheely chair, at one point I cruelly wished he’d keep going so it toppled over. He was abrupt, insensitive and uncaring, I was so stunned and shocked and felt harmed by someone I didn’t really know. He did explain why the psychologist had been suggested, if I deal with any stress internally then my body may start to heal from the inside which in turn will help the outside – or something like that, I must admit I had started to zone out a little by this stage. I asked him why I had follicles that weren’t growing – he responded with, “pffff, we don’t really know.” Mum pushed him to say that his referral meant that there was still some hope to which he said yes, but in all honesty, by this point I didn’t believe much that was coming out of his mouth.
After that appointment I reacted in a way I hadn’t before. I didn’t want to talk, I didn’t want to be around anyone, I didn’t want to ‘be’ really. In that instance I felt I had no fight left, nothing, zilch, I felt done. I wanted to run away, not have to face any of it anymore, I felt like I had reached crisis point and all because of the way that a specialist of the NHS had spoken to and treated me.
He is going to refer me to a specific hair loss dermatologist at Guy’s which I will go to and I will attend the first psychologist appointment but after a restless night and thoughtful morning I have come to a conclusion. I do not need to be cured in terms of my hair. My lack of hair is not offensive contrary to some socially inept people, it doesn’t make me any less worthy of love or affection. Like I’ve said before, I miss my hair every single day and I hate the person that stares back at me just as much as the day I shaved my head. But the conclusion I’m coming to is that maybe that’s because I haven’t allowed myself to accept it because I’ve constantly been looking for a cure. I’ve seen my hair loss as something disgusting and something wrong with me. But actually, I don’t need to be cured. I don’t have hair. I’m HairlessHannah, baldblogger. This is me now and hair doesn’t define me, I don’t need a cure. It’s not disgusting, okay it’s not something we see often but it’s not harmful to me or to others. That thought is actually quite freeing, I’ve never considered it that way before.
The rest of what I’m going through DOES need a cure. I cannot live the rest of my life in pain, with constant fatigue, noise and light sensitivity, in isolation, not driving, socialising, working, earning. I cannot live with pins and needles from the neck up for the rest of my life. All of that needs a cure. Not management, a cure. And if a cure for that is found then MAYBE my hair will grow but MAYBE it won’t. If the rest of it is cured, I will be able to wear hats and wigs if I so choose, I can wear make-up and jewellery. I can make myself feel more feminine again but my hair doesn’t need curing.
So, I will see this other guy, I will try out the psychologist incase it will help with my illness but apart from that, hair wise I’m done. I’m done with trying different treatments, herbal remedies, seeing different “specialists” because I simply don’t need their lack of bedside manner. I am taking back the control again. I don’t need their opinions. The only opinion needed in terms of my hair, is my own. So from now on, I am bald, I have alopecia and I am proud. My hair may grow back one day but it also may not and I need to start accepting that. And as I cry whilst I type this, I know that this is the first step towards starting to love myself again which, as my dear friend told me during our reiki session this week, I need to be able to do that again because it’s actually more important than we realise. Hate in any form isn’t healthy so self hate can’t be doing me or my recovery any good.
As a teacher, no, as a HUMAN, I always strive to treat every child, every parent, every person I come into contact with, with the utmost respect, care and kindness. I imagine how I would feel if I was receiving the news being delivered to me. I go out of my way to help people and to make sure they know how much I am investing in them. I know the NHS is under great strain at the moment but if the bedside manner isn’t there, that’s when patients start to lose faith. That’s when patients walk away from any potential help that could be available. That’s when the system fails us.
So regardless of your job, just remember that your job as a human is to treat people how you would want to be treated. Everyone is fighting something on a daily basis so be kind, be mindful and think before you speak.
Can you believe it is one whole year since I wrote my first ever blog post? I certainly can’t. Although this year has felt like one of the longest, toughest years,when I read over that first blog I realised how much has changed. How much I have changed.
Throughout the year I have had to learn to deal with a wide range of emotions. It seems like whenever I take a step forward, inevitably (it seems) something happens to knock me back again. It’s like I am constantly swimming towards shore and as it comes into sight a strong current comes to sweep me back out to sea again. I have almost come to accept that now which makes me sad. I continue to be as positive as I can be but I must admit, I am finding that hard.
However, having said all of this, I finally feel like things are beginning to move in the right direction. The neurologist we are seeing has been brilliant. He wants to get to the crux of all the medications I’m on by seeing which ones are actually helping me and which we can get rid of or even replace with something better. He has also prescribed anaesthetic patches which I can put on my head to hopefully numb the pins and needles and dull the burning sensation. I’m on day 2 now and as yet nothing has changed but I am hopeful that with perseverance they will be the best Christmas present ever!
I definitely feel like I am braver than I was last year. Because I’ve lost some of my independence, well, quite a lot of it, it makes me even more determined to be strong and brave when there is no one to support me. For example, this week I went up to Kings by myself and had a skin biopsy and more blood tests. Dad tried his very best to get to be with me but London trains decided to mess things up and mum was in Wales and I told her in no uncertain terms that I’d be so angry with her if she came back! And anyway, she has always said that if she’s not there in person, she is always on my shoulder to give me love and support. I must admit I was so nervous but I survived it. Yes I cried in the middle of the blood test waiting room but who cares?!
I’m also much better at asking for help when I need it. Telling dad I need to hold onto his arm because I’m shaky and my legs are weak. Before I would have struggled on. Not feeling embarrassed when I can’t open a bottle or carry something heavy because of my stupid joints! Little things but huge steps for me.
I may have bought a flat and lived alone for several years, lived in Dubai and travelled the world but this year has been the biggest learning curve for me. In many ways I feel I’ve reverted to childhood because I need to depend on my family so much in every way imaginable but I also feel more of an adult than ever before.
Like I have said many times, I have concentrated on focussing on the small things to make me happy. Last week a group of my beautiful friends organised a Christmas meal for me. They took into consideration all the hurdles that prevent me from doing things and eliminated them so that I could enjoy the evening. They will never know what that meant to me. I sat back that evening and looked around the table and also thought of my other friends who weren’t there and thought about how amazing they have been over the last twelve months and I actually felt slightly emotional. These girls have all been though unbelievably tough times over the last year, some for more time than that, yet they aren’t inward looking. They are always there when you need them, always supportive, always the friends that have become like family. I sat there and just thought how blinking lucky I am. Some people won’t ever experience friendships like I have or have the bond that I have with my family.
Christmas is fast approaching and last year there is not one photograph of me. This year there will be, with the patch on my head and everything! I’d never really experienced the emotions that some people talk about when it comes to Christmas but last year I did. It was a bizarre experience. Christmas is another social media aspiration; everyone laughing and joking in their jumpers, sipping champagne,eating the best lunch and playing games. But life isn’t like that. Last year I didn’t want Christmas because I hated my life, I wasn’t in a happy place. It is one day but I didn’t really want it to happen, it was the first time I’d ever cried at Christmas. It’s such a funny time of year but it has always been one of my favourite times. I am all in for lights and festivities! So this year, although so much is going on and there’s no hair, still a world of pain and uncertainty, I am going to treat it like another day but just with a little more fun thrown in.
So, before I sign off I want to have a moment to write a mini Oscars speech! Firstly by saying thank you to everyone who keeps reading my blog and sends messages of encouragement and love – they mean the world and keep the positivity levels up! To all the people who have given up their own precious time to help me with reiki and reflexology and provide support with trying to do a little bit of work. I often wonder why I have been so lucky to have relationships with such amazingly talented, kind people – thank you, everything you’ve done has helped me deal with my circumstances and take steps in the right direction. Thank you to my friends who keep me laughing, help me feel normal and hold no grudges when I have to cancel or leave early. Each one of you are diamonds and I look forward to 2017 where we can continue to work out life’s ups and downs together! And finally, thank you to my family who goodness knows have also had their lives interrupted and turned upside down – there are no words but I think you know how grateful I am and how much I love you.
All that’s left to say is Merry Christmas and may 2017 bring you good health, good luck and good times.
It is a year today since dad shaved my head. So I thought I’d play a game of spot the difference! On the left is a photo taken just after the big shave which I didn’t post on social media but sent to a few friends. The picture on the right, I took yesterday morning. There are four main differences that I can spot – see what you think before reading on!
1 – My eyebrows! One set are real, one set are tattoos. Both equally as good!
2 – The pictures on the wall are different. Life affirming quotes replace pictures of friendships that have faded over the last 365 days.
3 – The suitcase that held the hopes of going back to Dubai has been put away and in its place is Grandma’s chair. This little area is now where I sit to write my blogs and ideas for books. My little, quiet safe place.
4 – My face! I look at the picture on the left and remember how painfully hard it was to take this photo. After that I didn’t look at myself or take photos for a good few months. It was a relief to rid the pain staking possibility of hair loss each morning but it was one of the hardest decisions I ever had or possibility will ever have to make. Yet now there is a little smile. There is a little more confidence. There is a little more acceptance. Being bald is a far cry from what I hoped I would look like a year on but it is my reality.
The picture I did post on social media a year ago was this:
I tried to deal with what was happening with humour. Humour has been massively important to me this year. At times I use it as a defence mechanism but most of the time it’s a coping mechanism because if I don’t laugh, I’ll cry and although I’ve cried a lot, I think on balance I’ve probably laughed more. I did make it through the day and I have made it through the year and it has taught me more about life, friendships, resilience and family than I could ever have imagined. I wouldn’t say I’m a better person because of this experience but I would say I’m a more rounded person. I have more empathy for people, I know that I can face adversity and remain positive for the majority of the time and above anything else I’ve learnt that society can be cruel and unkind but that on the whole, people are kind and open to learning about things they may have no previous understanding of.
I’ll always continue to raise alopecia awareness whether my hair returns or not because I will always consider myself an alopecian. I have drawn strength from others with the condition so I would like to think by continuing to spread awareness, someone else will be able to gain strength and have hope. Who knows what next year’s spot the difference will look like? Life is unpredictable but we only get one chance at it. So, my mantra as always, is to try to find the sunshine in every day.
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.
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.
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!
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!)
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.
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.
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.
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.
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.
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!
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.
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!
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