This is the fourth post in my new blog series, How Do I Look? and I’m so pleased that you are enjoying it so far – your messages and comments have been so encouraging, so thank you! I have used this blog to write about rosacea for the past 6 years and I wanted to open the conversation about skin positivity and visible differences so I can cover (and learn about) lots of different topics. Every week I am going to be talking to an inspirational and interesting person to share their story and experiences to help and support others.
Today’s post is dedicated to the effervescent Susie (@susiebluesyy). I ‘met’ her online years ago and she has been entertaining me and filling my timelines with joy ever since. We finally met in person 2 years ago when I was a guest on her (sadly now-defunct) podcast, The Try Pod. She has a complicated history with her health, which I will let her explain, but in this interview she is talking about her recent struggles with Telogen Effluvium. This interview is also very timely, as August is Hair Loss Awareness Month – please feel free to share this interview to help spread the word, educate others, and make sufferers feel less alone.
Tell me a little bit about you and your visible difference…
“I should start at the beginning: I have a totally average appearance and I’ve always considered that a giant privilege because it allows me to exist in this image obsessed world without scrutiny. Essentially I have the usual set of flaws that I wish I didn’t but it all balanced out because I was blessed with a truly sensational head of hair. It was super versatile and long – naturally curly, but miraculously in a manageable way rather than a wayward and frizzy way and, if I fancied it, I could straighten it easily. It was The Thing that made me feel confident when I left the house every day, and it was The Thing that could tip the scale from feeling totally average to feeling legitimately HOT!”
“So imagine my dismay, when one day in June 2018, my hair started falling out. At first I couldn’t figure out if it was actually falling out or if I was just going mad – I couldn’t remember what a normal amount of hair-loss was, so I’d obsessively Google ‘how much hair should you lose every day?’ Within a few weeks the loss had increased so significantly that I filled my entire bathroom bin with hair from my brush after just one wash. I realised it was something I needed to address. I rang my GP who was TOTALLY USELESS – she refused to see me and just sent me for blood tests. Whilst I was still waiting on the results, I became so panicked that I took matters into my own hands and went to see a trichologist privately. I sat terrified in her office; my uncle had alopecia areata when he was younger and it can be genetic, so I was fully expecting that diagnosis. The trichologist spent ages inspecting my scalp and eventually diagnosed me with a form of alopecia called Telogen Effluvium – which is characterised by excessive shedding of the hair, usually caused by something happening 3 months prior to the loss. Typically it could be caused by having surgery, having a really high fever, or instances of very high stress. As it happened, 3 months prior I’d been having an extremely stressful time at work so the timeline made sense. The trichologist also sent me for extensive blood tests which revealed that I had low vitamin d levels – which can exacerbate or cause hair-loss. Because my case was so dramatic (my trichologist said it was the worst case of TE she’d ever seen) we concluded it was probably a combination of stress and low vitamin d. The treatment was a high dose of vitamin d supplement for 3 months, and … patience. My hair continued to fall out in giant clumps for another 4-5 months, and I also stopped growing body hair, and lost some of my eyebrows and eyelashes. Almost simultaneously I got psoriasis on my elbows – a skin condition which is also linked with stress and vitamin d levels. It was like my body was screaming at me that I needed to change my life, and I went from feeling confidently average to hideous.”
What are the common misconceptions, comments, or questions you get about TE?
“That it’s ‘just shedding’. TE is the overall thinning of hair – you can see your scalp in places but it’s not always as obvious as the bald patches that are associated with alopecia areata. This often makes people think it’s no big deal and you’re being dramatic because it’s easier to hide the loss. But for me, it was the feeling of being out of control which was the worst. When your hair is falling out, there is literally nothing that stops it. You don’t know how much you’ll lose, when or if it might stop, and if it will ever come back. It’s such a horrible feeling. With most other illnesses as least there’s some kind of treatment or prevention. With hair-loss there is nothing you can do, you just have to accept it. People also really love saying “it’s just hair” which feels absurd. It radically changed my appearance, which is the first thing people see when they interact with you. It’s much more than hair!”
What do you wish people knew about TE?
“I remember confiding in someone how shit I felt and they suggested I go to the hairdresser to cheer myself up. They meant well, but in reality that was the last place on earth I wanted to go. I felt so ashamed and embarrassed, the thought of a hairdresser seeing my mess of a mullet made me feel sick! In reality, I would wash my hair every day and just scoop it into a tiny bun at the nape of my neck to hide the loss, and try to not think about my hair at all. I didn’t get it cut for 9 months, and when I did, I found a mobile hairdresser who came to my home, after I sent her a long email explaining why I looked like Worzel Gummidge. The other thing I found was that it’s an actively painful condition. My scalp felt like it was on fire most of the time. It was itchy, burny, and sore and sometimes so painful I couldn’t even sleep. “
How does it make you feel on a day to day basis?
“I have a complicated medical history: a tumour on my spinal cord temporarily paralysed me in my early 20s (long story!), and I live with chronic pain and reduced mobility as a result, so I know all about Big Deal Medical Stuff… and I can hand on heart say that hair-loss ranks up there in terms of emotional trauma!
In the height of it, I felt like I was losing my mind. I would compulsively Google hair loss and took every vitamin and tried every shampoo. It was expensive and consuming and I felt so on edge about it. Because I knew stress at work had caused it, I wanted to quit my job straight away but I couldn’t because I was in the midst of remortgaging my house. That made things a thousand times worse because I felt so trapped. It also had, and still has, a huge impact on my confidence. Hair really makes a difference to what you look like and within a short space of time I went from massive curly hair to only being able to have a tiny little bun at the back of my head. I looked like a completely different person, to the extent that I saw some people who didn’t even recognise me and that really affected my confidence. I cancelled plans. I wanted to hide. I just didn’t feel like me.
My hair is verrrry slowly growing back now, but I am always worried that it will start shedding again and I’ll lose all my regrowth. I hope that if it did happen again, I’d handle it with a little more clarity and grace – but who knows!”
What are your thoughts on media visibility of TE?
“I think in the last few months general awareness of hair loss has improved. There are lots of amazing people on Instagram who actively share their journey and watching these young women turn to alternative hair / head scarfs and publicly Own That Shit was a real turning point for me. It made me feel less alone and that I could get past this.”
How do you deal with bad days?
“Sometimes I cry, sometimes I post something on Instagram to get support, and sometimes I just wait for it to pass and distract myself with a film or something. Ultimately, I’ve had a lot of health shit in my life and I think as long as you can still laugh, in the end you’ll be okay.”
If you have consulted the medical community for your TE, how were those experiences?
“The NHS were absolutely useless because it’s just not considered a priority. My GP – after much insistence from my part – referred me to a dermatologist, but the wait was over 7 months long. Hair falls out fast so realistically that would be 7 months too late. The people I saw privately were amazing, but it makes me cross that people who aren’t in a position to pay for it can’t get access to expert advice. Hair loss isn’t just a cosmetic issue: more often than not, it’s an indication that there’s something off internally (hormones, vitamin levels etc.) Plus the hair loss itself has a huge holistic impact on your health and well-being. So many women suffer from it, and we shouldn’t have to suffer in silence.”
In the past few years there have been more conversations around the link between skin and mental health, what are your thoughts?
“I absolutely think that there’s a giant link between mental health and skin conditions. For me, stress triggered it all and it then became a vicious circle. Whilst stress caused the hair loss, the hair loss itself was incredibly stressful – at times it felt like an impossible battle to neutralise the circle of stress!”
Have any positives come out of your TE?
“YES – there is always a silver lining! Firstly, I quit my job which was the cause of my stress. Secondly, the hair-loss community I’ve found on Instagram are incredible. I find Instagram a bit cliquey at times, a lot like school with the popular kids ruling the roost. The hair-loss community is a breath of fresh air; built on sharing vulnerability and making genuine friendships and connections, it’s about pure support and love and good energy. Special mention to absolute huns @hairlossboss and @kimdubs – they made me realise that I don’t owe the world a full head of hair, that I can own my situation, that I’m not alone, that there are solutions and that it’s okay to have a sense of humour around it all. And finally – I learnt to have confidence even when I hated how I looked, which is pretty awesome.”
Top tips for living with TE?
“Patience and acceptance. It’s a long road because it’s very unpredictable and also hair literally takes years to grow. I have to accept it; in reality my hair looks shit compared to how it used to. It is what it is, but I refuse to live in despair forever. THAT WOULD BE SO BORING! I am making a little bit of hair progress now and rather than live in fear that it will fall out again, I have vowed to try and celebrate all good hair days from now on.”
“In all seriousness, if you’re struggling with hair loss, I’m happy to talk and help how I can – my instagram is @susiebluesyy and I reply to everyone that I can!”
Thank you so much to the lovely Susie for talking to me, and for sharing her experiences with TE. You can follow her on instagram HERE (if you’re a fan of chatty Instagram stories then you will be in heaven!), and read her blog HERE.
Read the other posts in my How Do I Look? series here: Michelle on scars; Sofia on Acne; Natalie on Vitiligo; Amy on her Port Wine Stain Birthmark; Gemma on Psoriasis; Amara on Eczema; Grace on her scars; and Judy on her sensitive skin.
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