Lupus, Hair Loss, and how I fought for my hair and my identity and how you can too!
August is always a weird month for me. Officially it’s ‘Hair Loss Awareness’ Month – and with it comes this weird set of emotions and triggers that at times is hard to describe and even harder to put into coherent words.
I've been dreading writing this post. I knew I needed to do it and I've been mulling it over for the last few days. It's a somewhat cathartic experience, like ripping a plaster off, I knew at the end of this, once I'd been able to fully articulate everything I'd feel better. That sharing my story, and the story that so many of us have been through would be help. It's just taking that step, it brought back a lot of emotions that I didn't want to face. Memories of loss, memories of pain, but also memories of happiness, of redemption if you will. You see this post is about me, the founder of Ginger & Pearl, in honour of 'Hair Loss Awareness Month', this is my story...
Lupus and Me
When I was 19 I was finally diagnosed with Lupus. I’d suffered almost two years of symptoms ranging from muscle pains, to unexplainable fatigue, all of which baffled my local GP. Looking back I guess I'd managed this time mentally by putting on this stoic, sarcastic, front that beguiled most of my friends and family into thinking that I was dealing with whatever I had much better than I really was. When I finally got a diagnosis I was half relieved half devastated. I guess I’d wanted the doctors to tell me that whatever I had was curable, fixable; take one magic pill and poof I was back to normal.
Sadly that wasn’t to be the case.
If you don’t know about Lupus then all I can really describe it as is all consuming range of symptoms that leave you feeling like you’re in a constant fight with your own body. It leaves you on the inside feeling like you’re drained, beaten, but on the outside you can look so so normal, so healthy that you have to be always reminding people of why you’re tired or why you can’t go out / do something because you did something five days ago and your body still hasn’t gotten over it. You find yourself having to justify every decision because you look fine on the outside. And this is part of the pervasiveness of it all; that your body is not only screwing you over but that no one else can see it.
But I dealt with it. I was determined that whatever was wrong with me it wouldn’t define me. Wouldn’t control me. If anything I started seeing that because on the outside I looked normal that I could pretend, pretend that I was healthy, normal even and no one would be any the wiser. And for a while this tactic actually worked. I was prescribed a medicine that really did control my symptoms and by managing my energy levels I could live a normal life. I could be normal.
My Hair Loss
And then one day the worst happened. I found my first real bald patch. Now, to explain it properly, hair loss is both a symptom of Lupus and a side effect of the medicine I take. It’s a double edged sword – the medicine makes this one symptom worse while all the while fixing all the others. My hair didn’t just come out in a few strands it literally fell out in clumps everywhere I went. People would make jokes about me ‘shedding my winter coat’, and this wasn’t to be insensitive or malicious it was just how people responded to me and to a situation they had never encountered before. I would block the drains with my hair to the point where I would be daily using a chemical unblocker to manage it (thank you Mr Muscle!!). I kept my hair tied up most days but then this highlighted the bald spots, where my hair didn’t grow and where the remaining hair didn’t cover it. There’s only one word I can use to describe how I felt and still feel about this time. Devastating. I felt like I was not only losing my hair but losing a part of myself, my identity. I would dream at night about having long hair, the feel of it on my skin, down my back, even now I can still feel this strange emotion every time my hair brushes over my shoulders. It felt carnal, like some part of my soul was being ripped away and there was nothing I could do. I would look with envy, almost hate at the other girls as they flicked their hair in the sun and I would withdraw even more into myself. Even more into the shadows.
Vanity Over Medicine
For a while I’ll admit it I did rebel – I stopped taking my meds because my hair got so thin that my confidence hit rock bottom. I had become this dark, angry creature and I no longer recognised who I saw in the mirror. So I stopped taking the medicine. The medicine that had essentially stopped all my pain. That had stopped my symptoms because I valued my hair more than my health. And unsurprisingly I got sick again. Really sick. When the doctors ran their tests they were angry (and rightly so) that I was sick simply because I wasn’t taken my medicine. That essentially my own vanity was making me ill. Imagine trying to explain that to a healthy person – it makes no sense but to me it was logical. I would rather be sick than lose my hair. But as my sickness got worse I realised that it wasn’t an option anymore. I had to take my medicine to live. I had to sacrifice my hair, sacrifice my identity to be alive.
Finding A Real Solution
And this was the day everything changed because I made a decision. I decided that I wouldn’t live my life compromising my health vs. my hair. My happiness vs my symptoms. So I took my meds. And I became all consumed in finding a solution for my hair. I started off with simple tricks – extensions, clip ins at first and then proper ones when I could afford it. But this only masked my problem. I wanted something that actually worked on the issue not just putting a band-aid over it. And I knew the perfect place to start - my grandma. You see my family on my maternal side have a long long legacy in complementary medicine and herbal remedies. Remedies I used for day to day ailments, like arnica for bruises, most of these remedies I'd learnt as a child and were second nature to me. So I spoke to my grandma who gave me a remedy that definitely helped save my hair but deep down something told me I could do more, could improve it to make it better and more effective. So I began reading up and researching everything I could get my hands on. I have a background in pharmaceuticals (ironic I know considering my relationship my own medicine) and I wanted to find something, anything that would work with my existing remedy to super power it. I used myself as a human guinea pig. I mixed and tested what felt like hundreds of formulas. I read and reread hundreds of research papers and articles all on the holy grail of what makes hair grow. And eventually I got it. I found a way to enhance and drastically improve the results of my remedy, kickstarting healthy hair growth based on the hair growth cycle still with purely natural ingredients.
As my own hair grew back so did my confidence. I went from having a short, manageable cut that made my hair appear thicker than it was to long, beautiful tresses that flowed down my back and encompassed every hair dream I ever had. Friends and relatives would comment on how quickly my hair would grow, how good my hair looked and how happy I seemed. It was like I was projecting this inner strength suddenly and the whole world could see it. And then one day a close friend confided in me that her hair was falling out. It wasn’t a lot. She’d just noticed that as she’d hit her thirties her hair was getting thinner, lacking it’s silkiness, just not what it used to be. But she was devastated, in the same way that I had been when I’d lost my hair. So I did what any friend would have done in that situation – I gave her some of my hair saving products. I made them up for her, put them in a pot and told her to try them. And guess what? They worked! They really worked! Soon she was sporting beautiful, healthy looking hair, but it wasn’t just that, she was happy. You could see it in her eyes, in how she held herself, her confidence was back and she was glowing!
She was the first, but after her, I met so many others struggling and unhappy with their hair and how they looked. Everyone of them tried my method / products and they found it worked. But it wasn't just about getting their hair back, it was about more than that.
And you know what ? I was addicted – addicted to that feeling I got when I knew I’d helped her. I wanted more of it. I wanted that sense of fulfilment. I wanted to stand from the rooftops and shout out to every person that ever lived that had suffered, that had lost their hair and in turn a part of themselves. I wanted to help them. I wanted to give them their confidence, their identity, everything they saw in themselves – give that back. And for me, that was the day Ginger & Pearl really started.
It’s been a slow, sustained, growth – we’ve been unofficially helping friends, family, people for over two years now although our company has only just officially ‘launched’. But that’s how we’ve wanted it. You see for us, it’s not about numbers, it’s not about being a big faceless company, it’s about you, it’s about your journey, your story, and how we as a company can help you get back your confidence, your happiness, your identity.
Because your hair is a part of how you see yourself and that matters.
Check out our life changing products and find out more at Ginger & Pearl