Diagnosis ALOPECIA! HELP!??

Hi guys,

So I wanted to write a little that I hope may be helpful to any of you lovely people just recently diagnosed with Alopecia – of any form. I hope this is helpful…..
So, first of all – I am so sorry if you are losing your hair….. and if you are struggling emotionally with it all. It must be very tough right now at times. You don’t need to walk this path alone…… there is help available!
Alopecia (any type)…. can have a massive impact on anyone. Whether you are male, female, young or old…. it can really be difficult. We are all individual, and how it affects us is also very personal…. What I will say to you – even if it seems that it is impossible at the moment – it will be ok.  It will.

There is light at the end of what seems a very dark, bleak tunnel. If I can be where I am today, you definitely can!x
I once saw a post on my wee brother’s Facebook which was so:


I really 💗 love this quote!….. Because it is true! It really is! So if it is not okay for you right now, it’s not the end: it is just the beginning…… and it can be the start of a very positive time ahead!
Have you been to a GP or had referral to dermatology? Some of us have great and amazing experiences. sadly, many feel that they have had no help, and sadly don’t feel supported.

It is DEFINITELY the first route I recommend to ascertain what is happening and for diagnosis and to discuss any / all questions you have.

What I would recommend….. before you go, write down any questions you have…… as you may forget when there if you feel very fragile emotionally. I wrote a few down:

  • What exactly IS this?!
  • When will my hair come back?!
  • Will I lose all my hair?!
  • What can be done?
  • Where do I get a wig?
  • What am I meant to do?
  • Did I cause this? Is it my fault?

My GP was phenomenal…… she did tell me that alopecia is very unknown regarding the prognosis and outcome. For me, the unknown is the worst feeling. However, she was compassionate, empathetic and asked me “How do you FEEL about it all?” And I broke down in to tears. I can hold it together until someone says “But how are you?”

so Diagnosis: Alopecia Areata

Prognosis: It was very much a case of “wait and see” ……. oh, and try a prescription steroid cream if I chose to.
I left with a prescription for steroid cream – still not knowing whether my hair would return or more would fall out……..would I end up bald? I can’t go bald, I thought! I have a big, bumpy ass head! I just can’t! Can I? Please, no!
I think this photo below was around one or two weeks in to my hairloss……as you see, I wasn’t best pleased….. (some may say “resting bitch face!” Oops!)


so how long would it take to come back? When am I having my hair again? ……There was no answer for me. This was INTOLERABLE for me! I constantly checked the mirror, I took photos, I was obsessed! However, still no answers.
The GP I saw; she recognised that the emotional impact was massive for me. I had been told “it looks like alopecia areata – we will refer you to dermatology next appointment. If you need to see me again, come straight back. Otherwise, I will see you in 4 weeks to reassess” (I didn’t wait 4 weeks…… I called back after 2 and asked for a speedy speedy referral as I was going to be absolutely hair free pretty soon!…..It was the lash loss that hit me the hardest).

I again asked if my hair will return. I had an all over scalp itch and my head felt as though it was on fire! The GP was honest and said it was unknown if I will have regrowth, or if I will have further loss. It was all happening so quickly! And I didn’t get the answer I wanted…. however, I got a direct and honest answer in a very compassionate way.  I went back to see her…….

On leaving, I felt happy to have at least what felt a diagnosis. I did my usual – I went online and searched every dermatology site I could find……. and used my friend “Mr Google” as well as searching for medical evidence and research……. and was surprised at how little I could find research wise.

So I guess I felt a little in limbo. What do I do now? Let’s be pragmatic ……. so I have already shaved my head as I couldn’t cope with seeing the hair fall out. For me, this was the right thing to do. I am not saying that it is for everyone…….

one piece of advice I give to everyone…. DO WHAT FEELS RIGHT TO YOU!!! friends and family can always listen and give advice……. as can others via support groups etc. However, at the end of the day – NOONE can ever KNOW how you feel……. because no one has ever been you or walked your path and had your experiences….. so regarding wigs / cover solutions / shaving / cutting hair / going au naturale / headwear……ultimately, IT IS YOUR CHOICE!!!!! I alternate what I wear (or don’t) on my head daily- depending on how I feel.
FRIENDS AND FAMILY

THESE are the people we normally turn to for support. I’ve been blessed with such amazing support from those around me and special to me.

Sometimes friends and family, however, can make comments or suggestions that you feel hurt and upset by. Remember, most people do have GOOD INTENTIONS….. sometimes, you may feel their comments are insensitive or that they don’t understand. The truth- no one can fully understand.  The comment I always found amusing (and still do)….. “YOU HAVE A LOVELY SHAPED HEAD”…..Why thank you! 😂🤣😂🤣.

I am not sure why I find this so funny….people say it a lot! Like,  really often! And the funny thing….. I don’t…… it is huge looking! I now have a head tattoo, but I’ll pop in a photo of me before the head tattoo…… you could fit a whole other face on my forehead!…… you’re looking to see if you could, aren’t you? Haha! Caught you! And yes, you could indeed!x

 

EMOTIONS! AAAARGH!

Are you feeling angry or upset? Confused? THAT IS ALRIGHT!!!! There is a whole mixed bag of emotion that many of us feel. The best advice I ever received st the start of my alopecia journey was from my friend, Suz….

Alright, she didn’t say it like Yoda! (But I 💗 Yoda)…… suz said “IT IS OKAY TO GRIEVE THE LOSS OF YOUR HAIR!” And guesss what…. she was totally right! IT IS! Please remember this! ALWAYS!!
My hairloss was rapid. In some ways I think I was lucky……. whilst I had to adjust to a rapidly changing appearance……. I am thankful, as I am not sure I would have found a prolonged loss as easy to deal with? Each has its own difficulty. We are all different, and will all cope differently.
What I would say: if you are upset – allow yourself to cry when you have to. You are HUMAN. You have emotions, and every emotion is valid. They are! they are not always pleasant – but they are nevertheless valid!

 

Sometimes, we try to block out our feelings and ignore / suppress them when they are not very pleasant or positive…. but they will remain lurking in darkest crevices of the mind…… and they will continue to torment as they read their ugly heads at the most inopportune moments…… trust me, I’ve been there!

 

The best way to overcome (in my personal opinion), is to experience those emotions and allow yourself to move through the stages of grief / hurt / anger until you reach acceptance. Think Kubler-Ross!
You are special, and beautiful. Losing your hair does not stop you from being beautiful. Even if you do not feel it within yourself.
A changing appearance can be very difficult to adjust to, and to accept. It is a process and a journey as we have said……There are support groups: online, and in person. I’ll quickly insert links here for you before I continue (UK BASED)……….

ALOPECIA UK GROUPS NEAR YOU Sometimes meeting others with similar experiences can be beneficial

ALOPECIA UK closed Facebook group Is a safe closed group to speak about any issues with others who also have hairloss / are affected by hairloss for those in the U.K., or from the UK.

CHANGING FACES  is a charity that aim to help and support anyone in the UK with a changing physical appearance.
HAIRLOSS SOLUTIONS

Another thing people frequently wonder and ask me……. can I cover a patch of lost hair? Yes, there are products available that you can buy to cover up bald patches.

Fibre type sprays..….. I’ve seen people use them with androgenetic alopecia on their thinned hair.. I’ve also seen those with bald patches of areata use the products – and I would have never known!  They look pretty blooming fantastico!

Hair toppers….. so these are for people who have thinning hair on top…..  they usually are attached by clips to the top of the head and look very natural over your own hair. Think “clip in extension” top hair piece with parting etc.

Halo hairpiece……. okay, so this is the inverse of the topper – it should really be called the “bottomer” ….. i think!  the halo has hair on a fine loop (hence the name: Halo)…..this is perfect for those who have lost only the underneath area of hair. Easy to have in or out within seconds.

Wigs……. so I know many people are totally freaked out at the thought of wearing a wig in Public. I’m not sure why we feel this way, I know I did! STIGMA STIGMA STIGMA!!!

I felt like a fraud or just like I had a huge flashing sign over me saying “WIG WIG WIG! …….HOWEVER, think about it….. many people nowadays have hair extensions / weaves…… and many even wear wigs for fashion! It really isn’t any different. I found it helped me to think of it as a full head of extensions just on a cap! It kind of is!  And believe me, rarely would anyone know you are wearing a wig! Honestly!

Hair Systems……. if I have lost you, don’t worry! I was absolutely bamboozled at first too! This is a glue in method of hair replacement that some like. I have never tried this…… I know some who have.

Headwear…. so I have a whole article on headwear you can read HERE. This was never an option for me until recently. I won’t repeat myself as you can see the article….. however, scarves / hats for headwear are available. I do recommend spending a little extra to have something that is confortable and designed for hairloss. My personal preference is Purity Headwear.

So the above are just some ideas you may want to consider. Or you may choose to just be au naturale and your beautiful self! DO WHAT FEELS TRUE TO YOU!

If you don’t have a clue where to go for wigs / hairpieces / headwear, I recommend two particular companies who do sell all of the above……

  1. ALIKINS HAIRLOSS SOLUTIONS this is an amazing company – and owned by a friend of mine. Prices are very competitive, and Carly will give you so much help and advice. She, herself, has alopecia.
  2. SIMPLY WIGS Are another online company whom I just adore! The service again is phenomenal…… and again, prices are very competitive.

So back in 2015, I was a messy mixed bag of emotion. In public, I was bubbly and joked about my hair if I had to discuss it. In the quiet of my own home, I would cry.
I felt like I didn’t know myself. I cried. I cried A lot.
I did feel that meeting others and chatting online with those in the Alopecia UK Facebook group was a massive help to me.
Even an understanding groups of friends and family can be so empathetic at the beginning…… people often forget that months down the line – and years for many – the struggle is still so real. How do you adjust to a life with no hair?  With not really seeing yourself in the mirror? The “you,” that you feel inside is not who you see looking back at you

img_3967

Time and acceptance it was for me. Sounds so easy, doesn’t it?! It really wasn’t – but if I can get there – all of you can. I promise!
I had amazing support. I 💗 the charity ALOPECIA UK, and I would not be where I am today without their 💗 and support. Especially Jen Chambers and Amy Johnson who both work for Alopecia UK.

And from the numerous people I have spoken to via the group page on fb! Thank you!
so where do you go from here? PLEASE PLEASE PLEASE do not put pressure on yourself to have to be ok with hairloss.

The truth is, you don’t have to be happy about it – you also don’t have to be accepting. Acceptance takes time.

Please do seek support for your emotional and mental wellbeing if you are struggling. See your GP. Seek out support groups whether online or in person. Ask your doctor about referral for counselling if it is available.
Alopecia, I felt, was a huge curse. However, I now consider it a total blessing. I am the heaviest I have ever been weight wise, I have no hair, I look a bit strange to many – but I am happy with me! If people find me odd looking or strange, that is okay – because Alopecia forced me to really examine the person inside.

I know who I am……..  I know my strengths as a person….. I also know my weaknesses. I know what I like about myself, and I know what I want to improve upon.
You are very special, and losing hair can never take that away from you.
I’m sorry that this post has been excessively long. However, we all know I 💗 a good chat!

I am not sure if I have covered everything I intended to, at this point. If not, I shall change later.

Please do contact me by email if there are any questions I can answer for you.

Email me at: Michelle@BaldBarbie.com

until next time, all my love 💗 💗…….. and give yourselves a big hug from me! Do it! 😘

Lots of love,

miche (aka baldbarbie)

x x x x x x

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