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My Story – Hair for Hope – Why I am donating 40cm of my hair to charity

On November 20, I’m going to be donating 40cm of my hair for wigs whilst aiming to raise awareness and money for invisible illnesses. I would appreciate any support you can give. If you can’t donate money, please donate your time to reading my story. 

Living with invisible chronic illnesses for most of my life has been hard and it’s something I rarely ever talk about it. But considering October is Dysautonomia Awareness Month, and my phone and computer still don’t recognise ‘Dysautonomia’ as an actual word I think it’s about time I started the conversation. 

In June, CNN published an article covering several patient’s journeys with POTS titled “A doctor said it was all in her head, but it was ‘the most common condition you’ve never heard of’” The article explains how most doctors aren’t even familiar with the condition — this is something I am not a stranger to: as I often have to explain my condition and medication to health professionals. The condition is seriously debilitating and left me bed bound at 18 years old — “research … show[ing] that the quality of life in POTS patients is similar in what is seen in congestive heart failure, or chronic obstructive pulmonary disease”. 

I especially want to raise awareness as I started experiencing symptoms when I was in pre-school yet didn’t receive a diagnosis until I was 18 and bed bound. I suffer from both Postural Orthostatic Tachychardia Syndrome (POTS a form of dysautonomia) and Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome CFS/ME). Both conditions have no definitive ‘cure’ and limited treatment

For as long as I can remember I always wanted long hair, but try as I might I could never grow it…then I got sick. I became so ill I spent weeks on end in bed. So naturally, I wasn’t well enough to have my hair cut and overtime it grew. Coping with chronic illness is difficult and at times I would   wonder ‘why is this happening to me?’ and ‘how can anything good possibly come from this?!’ Then, one day I went to a doctor and he noticed I had ‘beau lines’ on my nails. These are lines that form because of severe illness and trauma resulting in the body stopping growth. 

After a while I realised that my body had pretty much shut down growth, but I still had decent hair. I thought “maybe there is something I can do with this?” – so I researched donating my hair. Then began my hope. I decided to grow my hair as long as I could for the next 2 years and I’m now chopping it off in the hope it will make someone else who is struggling happy. My heart soars at the idea because when I was young I honestly dreamed of the day I would have long hair. Now the day has come and it means more to me than I could have ever imagined.

I have always made an effort to hide what I’m going through. One of the ways that I concealed how I felt, was by hiding behind my long hair. My long hair was a safety net that distracted people from signs I was struggling. I also saw it as a silver lining because it protected me from starting the conversation about illness: a conversation in which I would have to explain why I don’t work and I can’t go to university. I didn’t want to be pitied. Yes, I am sick, but I do make it through life happily. Becoming ill has been a blessing in many ways, it has taught me about the important things in life and how to find the positive in every situation. 

But sometimes it takes time to find positives and hope. I was living through hell with my body but no one else could see it.Not even doctors. It was hard being told “nothing is wrong with you” – simply because my illness was invisible. All my life I was the ‘sick kid’, the one who was always away. I wasn’t diagnosed for years and I only found out about my illness because my mum demanded further tests after I became bed-bound in 2016. I became so sick I couldn’t walk alone in my house, I had to be fed and I couldn’t shower myself. These are things that isolate you and don’t ‘usually’ happen to an 18 year old girl. It was a long process, but through this time I learnt to accept life and what it throws at me. 

Please remember to be kind, as everyone is fighting their own battles. And remember to find your own hope, it will keep you going to the very end. It isn’t always easy but find it, create it and cherish it – make it yours.

Thank you for reading this far, it means so much to me that you took time out of your day to do so.

If you want to read more about Dysautonomia here is the article I referenced — 

And if you want to watch my story and the process of getting my hair cut, check it out here:

And if you want to keep up to date on my posts follow my instagram @findyourownhope

Find Your Own Hope

Welcome to my little corner of the internet where I share my journey of finding hope and enjoying life's simple pleasures. Find out more about me...




  • Belén Serrano.

    My hair is very long and I hve thought several times of donating it, your story is really inspiring for me. Thank you for sharing it, dear. xx

  • Susie

    Aw I think that would be a lovely idea to donate yours! We can do it together 🙂

  • Mica T

    That is awesome you are donating your hair! 40cm is a lot too! I've been growing mine for a while to donate, once it hits the 35cm guideline I'm going to donate it, in honour of my friend 🙂

    Hope that you are having a great week 🙂 I've been sick for most of it but I'm starting to feel better 🙂

    Away From The Blue Blog

  • Susie

    Yeh it is a lot of hair ahah I'm a little scared 😛 Aw that is such a nice thing to do! Do you have far to go?? Hope you feel better soon x

  • Dressed With Soul

    I'm so impressed about the fact you are donating your hair! You have wonderful hair and I have to admit that my hair is I think not good enough for donating 🙂
    xx from Bavaria/Germany, Rena

  • Kara Callahan

    That's wonderful that you grew out your hair to donate it! I've never really heard about POTS before so thank you for sharing your story and bringing awareness to it. You are so strong and inspiring, and it's great that you choose to see the positives in things. Can't wait to see how your hair looks shorter!

    x Kara |

  • InvisiblyMe

    I think it's a gift that you're using for such a wonderful purpose. I'm sure Nov.20th will be a big day in your diary. You will look beautiful whether your hair is short or long, and I think you should be really proud of what you're doing to so openly share your story (when as you say, you've hidden how you've struggled and what you're going through) and raise awareness!
    Caz xx

  • Oh Lady Mania

    Oh you are doing great work, May God help you in your work Amen 🙂


  • amely rose

    I heared a lot about those hair-donations and I think it's an amazing idea.
    You do 2 good things, spread awareness and donate it for lovely wigs.
    And your hair is really long and healthy. You are doing great work my dear 🙂 and can be really proud. I hope more people will do it and donate their hair or at least, be more aware of thise invisible illnesses

    take a look at my BLOG and my INSTAGRAM

  • Ayuna

    amazing post honey! really great!
    kisses from Poland :*

  • Susie

    Aw thank you!!

  • Susie

    Thanks girl! Thank you so much for taking your time to read it 🙂 I really appreciate it!

  • Susie

    Thank you so much Caz! Yes it is going to be a big day ahah! Thanks so much for your support 🙂 It means a lot xx

  • Susie

    Thank you so much x

  • Susie

    Yes I totally agree! I think so too! 🙂 Thanks so much <3

  • Susie

    Thank you 🙂

  • Nancy

    It is amazing that you're donating your hair for charity. It is something that many can do. It is unfortunate when doctors don't know the expertise to figure out what the symptoms lead to. I learned so much about POTS from this post. Your hair will make a big difference for someone else. You're a strong woman and sending you lots of love.

    Nancy ♥

  • carolina g. ticala

    Estupendo post! Feliz fin de semana! 🍁🍁🍁

  • Georgia.

    Such a great post – that's amazing that you've decided to donate your hair, I can relate to using it as something to hide behind. You're honestly so inspiring, and you've articulated your story so clearly, it's so brilliant that you've reflected on your experience and wanted to improve someone else's through your donation. Raising awareness of conditions such as POTS (which I'd never even heard of!) is so important – we need more stories to be shared <3

    // xx

  • Oh Lady Mania

    I have followed you through GFC, hope you will also do same 🙂
    Stay connected dear <3

  • Dominique W

    You are amazing for doing this! Thank you so much for sharing with us hun

  • Missy May

    Like I said on Instagram, this is a great thing you're doing. God bless you for that.

  • Heather Noire

    That is really an amazing and inspiring thing you are doing. I love your heart and true honesty from this post happy November 🙂

  • Mercy F

    Such a kind deed from you considering how much you wanted to have a long hair. I hope you're doing better and better each day. You've inspired a lot of people from your social media posts. Have a fun weekend dear!

  • Sheena Gonzales

    Wow that is amazing. What a great inspiring thing to do. More power and God bless. 🙂


  • FashionRadi

    This is so inspiring! You're amazing for doing this.
    Beautiful locks!

  • Karolina M

    Świetny post 🙂
    obserwuje i zapraszam do mnie :

  • Ady EverPretty

    oh, i like your hair
    mother of the groom dresses

  • Tania Franco

    Sharing your experience is giving others hope Susie! What you're doing is wonderful and inspiring. I can't wait to see your new cut beautiful!


  • Donating your hair to raise awareness of such an important cause is so lovely of you! My sister recently donated her hair too and now I'm planning on doing the same thing!
    Aleeha xXx

  • The Bandwagon Chic

    Awww this is pretty nice cause.
    Love it dear

    Much Love,
    Jane | The Bandwagon Chic

  • Susie

    Thank you so much! Yeh it can be so frustrating, I really appreciate you taking your time to read about it xx

  • Susie


  • Susie

    Thank you so so much Georgia! Aw your comment has truly made me smile 🙂 Thank you so so much xxxx

  • Susie

    Thank you!

  • Susie

    Thank you so much <3

  • Susie

    Thank you lovely 🙂

  • Susie

    Thanks so much Heather! means a lot xx

  • Susie

    Thank you girl! I hope you are going well yourself x

  • Susie

    Thank you lovely 🙂

  • Susie

    Thank you so much!

  • Susie

    Thanks 🙂

  • Susie

    Thank you!

  • Susie

    Thanks Tania! That means a lot! <3 you're too kind x

  • Susie

    Thank you Aleeha! Oh really!! That is so lovely of you guys! I can't wait to see how yours goes!

  • Susie

    Thank you xx

  • Leland West

    Great job dear. Your hair donation is a tremendous personal sacrifice that will not go unrewarded.

  • CL King

    The gift of tresses benefit cancer patients. When you look good you feel good.

  • Susie

    Thank you so much!

  • Susie



    WOW you really had super long hair and in such good condition. I think it is great that you are donating your hair. And you still have plenty left over!

    Allie of

  • I have been surfing online more than 3 hours today, yet I never found any interesting article like yours. It is pretty worth enough for me. In my opinion, if all web owners and bloggers made good content as you did, the internet will be much more useful than ever before.

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