Exclusive: Beth Does Beauty founder talks about her Lupus diagnosis for World Lupus Day

Beth Does Beauty founder Beth Smith is the face of Lupus’s UK current awareness campaign for World Lupus Day. Diagnosed with the autoimmune disease at just 18, Beth began to post about her struggles and experiences with Lupus online, writing numerous articles for us here at CelebMix on the subject.

We recently had a catch up with her to find out all about her becoming Lupus UK‘s poster girl and her plans for Beth Does Beauty.

What type of lupus do you have?

I have a form of lupus called Systemic Lupus Erythematosus, which is also known as SLE for short. There are 4 kinds of lupus, systemic lupus, neonatal lupus, drug-induced lupus and cutaneous lupus but Systemic Lupus accounts for about 70% of all cases of lupus.

Did you know much about Lupus before you were diagnosed?

Not at all. Even the doctor could not figure out what was wrong with me, they went as far as telling me it was all in my head, rather than exploring potential diagnosis. It wasn’t until I did something I actually consider quite dangerous – googling your symptoms, that Lupus popped up as a result. I had nowhere else to turn to, so researching my symptoms felt like my only choice. 

What was the hardest thing for you to come to terms with when you were diagnosed?

That there is no cure for having lupus. It caused a lot of anxiety and a lot of panic because I thought I was going to die because there is no cure until I found out, through Lupus UK, that while lupus can’t be cured it can be successfully managed with the right combination of medications. 

Equally as hard was that while I did have support from my immediate family and friends, none of them was adequately prepared to deal with how traumatic it was for me to go through. None of them, though they tried, really understood lupus – which is why raising awareness is so important to me, not just for the sake of diagnosis, but for helping people after their diagnosis. Resources and charities like Lupus UK are so valuable, they get no government funding, yet they are the best source of information I came across for Lupus to help my family and friends understand what I was going through. 

How does lupus affect you on a day to day basis?

I suffer with severe joint inflammation to the point where during a serious flare I am bed bound and in the past my housemates have had to help me do simple tasks like going to the bathroom, which really stripped me of any form of dignity, but a girl has to pee. Turning on light switches was too painful because the inflammation in my fingers was so bad that I would cry and my facial skin has been damaged to the point where I have the classic butterfly rash, which is a common lupus symptom with a rash across the cheeks and bridge of the nose.

Then again, it’s not just the symptoms from Lupus that I experience. The medication side effects can be just as bad. 

How has lupus changed your life?

Aside from spending some days being in debilitating pain and feeling like I can’t be a “normal” 25 year old, I try not to dwell too much on the negatives of being chronically ill if I can help it. I’ve definitely become more aware of who my friends are that I can count on if I get really unwell.

That said, through all the negatives I have learnt positives – I’m definitely more patient, a better advocate for myself through years of feeling my symptoms were dismissed and in turn that has made me better at listening to people and ultimately I’m better at choosing what to spend my energy on. 

What common misconceptions about Lupus do you wish people really wouldn’t believe?

I don’t know if anyone would count this as a misconception, but the assumption that because someone looks healthy or society’s definition of normal, that it means that there’s nothing going on inside my body. 

Inside my body, I am fighting something constantly. The pain is not visible, the only thing visible about having lupus, for me, is the butterfly rash – and even then I’ve been advised to “wash my face properly” or “stop wearing makeup” and it will go away. It won’t! 

You are the face of Lupus UK’s campaign, how did that happen?

The short version is that it took one photo to be posted on Reddit and 7 years of talking online about Lupus. 

The longer version is that I had a really bad day with my skin flaring, I wanted people to see the reality of beauty for me. So I played around with makeup, deciding to leave one half of my face completely bare and I had my own mini photo shoot with my phone. I showed a friend the end results and he introduced me to Reddit and told me to post it to a makeup group – so I did and overnight the likes, comments and views shot up, people were so kind. 

Lupus U.K. saw my work on Instagram, they got in contact to ask me if I would write something about Lupus and Self Confidence for their website, my article was later published in their magazine. After a few weeks of back and forth emails between Lupus UK and I, I received an email asking if they could use my photo to be their campaign poster girl for 2020 and I couldn’t say no! What an absolute honour! They asked me for a quote to go with my photo and after days of trying to find the perfect one, I had a lightbulb moment and told them that Lupus is only part of my story. 

Do you think it’s important for people in the public eye like Selena Gomez, Toni Braxton and Lady Gaga to use their large platform to speak up about Lupus and what they go through daily with having a chronic illness?

I’m a big believer in looking after yourself first, I feel once you are comfortable with looking after you, then you can make the personal decision to be public or not. 

Those are three women who are fiercely pursued by the media for anything and everything, let alone feeling obligated to share medical history that could be traumatic for them. Selena was kind enough to share with her fans, her community, to let them know she was healing from something they were concerned about, but she remains in control of how much more she shares and it doesn’t have to go any further than her Good Morning America interview. 

I don’t know how they do it. Sometimes even I feel like I’m giving a lot away about my personal data by telling people I don’t know my medical history, that makes me vulnerable and I’m not a multi-million dollar celebrity with people wanting to know everything from what dress size I wear to who I’m texting. I imagine just the sheer thought of them sharing their personal medical information on top of that could be distressing.  

But, if they ever feel comfortable, I for one am ready to be in their corner to fight for more awareness of Lupus across the world and raise funding to find a cure. I would love to work with Toni, Selena or Lady Gaga on projects for Lupus Awareness or a fundraising event. 

What was your idea behind creating Beth Does Beauty?

When my skin started to change from beautifully clear, to butterfly rash redness I became super self conscious. People would ask me about my skin all the time, I would feel people staring at me and my skin rashes. I was asked often if I was contagious, by complete strangers. It was so heartbreaking and soul destroying having to explain time and time again that I was just quite poorly inside and not contagious.

But what truly started Beth Does Beauty was how I was getting quite frustrated at not feeling represented. Absolutely no shade to anyone, but I was finding it hard to stomach models and influencers reviewing foundation and calling it full coverage, making claims that the product successfully hid what they called acne and redness. In reality, it was one spot and skin flush on beautiful, clear skin. It felt so insulting. So I decided if nobody’s going to represent me, I’ll represent me. 

How does it feel to know the images you post to inspire others?

I feel like I have a purpose now – it keeps me going through the bad days. I know how cliche that sounds but I absolutely feel like I have a purpose. 

Being able to put a smile on someone’s face, to be there as some form of comfort or moral support is the best feeling. Knowing I am trying to make the best out of a bad set of cards I was dealt with is so motivating. I get such a sense of relief that I’m doing something good, and playing with makeup which was initially just a form of comfort and distraction for myself has become a tool for others and it’s heartwarming.

You are using your platform to inspire and encourage others to be themselves and embrace who they are and educate them on Lupus, what made you decide to use your diagnosis as a positive thing when many others would have just hidden away?

I was tired of being angry. I was so unbelievably angry at myself for getting sick and it wasn’t my fault, it wasn’t anyone’s fault. That resentment was bad for my mental health, it was only me holding me back because I didn’t believe I was enough. I truly did not believe that I deserved to live my life to the fullest, to be my absolute best in the one life I get, because I felt ugly, I felt angry at myself and because I thought lupus defined me. Lupus ruled my life. It took away my independence, dignity and health. And at some points, my mental health suffered so much I thought it was going to take my life.

When I let that go, and believe me it took time and therapy to do so, I became very aware that other people manifest confusion and anger about being chronically ill in different ways. Talking about it really helped me, so I wanted to open that channel up in an accessible way and through social media felt best. 

At the end of the day, lupus is only part of my story, it has a huge influence on how I view my world, but it’s only part of my world. I am many other things, I am creative, strong, beautiful and brave. I think that can truly apply to anyone struggling to love themselves, chronically ill or not. There’s so much pressure on everyone to look, do or feel a certain way so that everyone else can have an easy life at our expense, but what about our mental wellbeing? Who is advocating for you? 

What are you plans for BDB in the future?

Originally, I thought I wanted my own makeup line, but now I’m not so sure that’s the direction I want to take with Beth Does Beauty. The makeup market is oversaturated with products, everyone claiming to have the best formula for everything and the truth is what works for some people, may not be the best for others. 

Beth Does Beauty is my baby. I want my baby to grow healthy, happy and strong – but the direction isn’t definitive. But what I do know is that I have a message that I’m sticking to, that you are worthy of life and love with makeup or not, you are worthy chronically ill or not. Lupus is only part of my story. 

I really want to be a safe space for when people are having a bad day. We all need someone in our corner when things get tough.

You can find out more about World Lupus Day and Lupus UK here. You can also follow Beth on Beth Does Beauty here.

Written by Kelly McFarland

Likes to post in black and white on Instagram. Avid Tea drinker, preferably Yorkshire Tea or Lipton Iced Tea and lover of Pop Culture. Contact: kelly@celebmix.com