We know that being chronically ill can be physically, mentally and emotionally draining. There are figures, articles and statistics to last a lifetime about chronic illness and mental health, but nobody talks about confidence. I feel the reasons that some of us (including myself) don’t talk about the topic of confidence is because we don’t want to be seen as self-absorbed when in the same instance I feel that being in a flare with a chronic illness is a time to think of ourselves more often than we do.
My personal experience with lupus features one prominent red butterfly rash, the occasional welt on my cheeks, rashes on every limb and a lot of joint pain. I actively searched for information and articles about people feeling they had low self-esteem because of their experience with lupus rashes, but I found very little about it and that honestly made me feel incredibly alone. It left me feeling anxious as if I was wrong to be so upset about the physical attributes. At 18, recently diagnosed with lupus and my body changing because of lupus I just stayed at home – I was angry that I was gaining weight from medication and that my skin was scarring and nobody could validate to me that the physical changes were dreadful too. Unfortunately, in reality, a lot of our judgements are made based on the cover of the book, as much as we try not to. I cannot blame those people at the tills that asked me the day of my diagnosis “can I ask, what’s wrong with your face?” when they saw my rash as I handed over my card to pay for my shopping – because people are very much driven by fear of the unknown, and my rash, lupus, is unknown to them – that said, it knocked my confidence because I was made very aware of the lack of education and the judgement they carried about my rash. You bet, I went home and cried and I didn’t want to leave my home ever again.
Being incredibly unwell and spending most of my time in bed, I needed to find something to pass the time and I started watching Tati Westbrook on YouTube, Tati is a beauty YouTuber and I vaguely remember her talking about how products are always aimed at people younger than her and how that made her feel left out and this instantly inspired me because she, in a way, validated how I felt – the feeling of being left out. I bought myself some new makeup and spent hours practising the low impact art that is makeup, following her tutorials or just freehand playing. Over 7 years I have perfected my makeup to cover my facial redness and scarring – but please do not think that this is what I learnt from all of this.
Doing makeup became my coping mechanism for life with lupus – makeup can be washed off, it is low impact and creative and helped me take my mind off the aches and pains. It became my take on art therapy. But the most important thing I learnt from makeup was how to love my lupus skin and how to take positives away from a disease I would outright call cruel. My rashes and scarring came on very quickly, there was no adjustment time to get used to the “new” look me with the butterfly rash, it seriously felt as if one day it was there and that was the end of the story. I had never had time to process that I had lupus, and processing time through anything traumatic such as serious illness and chronic illness is incredibly important – looking in a mirror to do makeup allowed time for me to process where I had scarring, where I had redness, what my face looked like now and I had the opportunity to pick the “good” bits out on myself too.
I would probably call it a form of projecting – the lady at the checkout asking what was wrong with my face (while not very tactfully put) she didn’t mean to offend me, she was asking out of pure human curiosity and rather than me taking the time to explain and let one more person know what lupus was. I took her comment as negative because I felt negative about my skin – I could have used that opportunity to educate and start a discussion about lupus, so instead I started Beth Does Beauty where I often showcase half a makeup look, one side of my face fully made up and the other half my bare, natural, lupus skin to remind myself that I am enough in both instances. Changing my own narrative about lupus allowed me to feel much more confident about living with lupus. You are in control of how you feel about your chronic illness and you are allowed to be upset about it too and I understand that lupus can feel like it controls you.
The confidence that you can lose from something as life-changing as lupus and the confidence to be gained from life lessons you learn along the way can be substantial on either side. I do not feel that my experience with lupus is entirely negative anymore and while lupus forced change into my life, I feel that anyone with a chronic illness learns the art of patience, the true meaning of friendship and, while this one is subjective, the importance of self-care.
I am incredibly aware that the irony in finding a way to love my Lupus skin was through “masking” it with makeup – but it allowed me to understand my skin, to study my face in a mirror so that I could add colour and most importantly, add a smile to my face. Lupus felt like it was stripping me of my confidence, but I took back control by taking the time to build up a relationship with my own body again. Unfortunately, it is common practice that people with chronic illnesses, facial differences and those with disabilities are not shown in the media that is such a huge part in our lives and this changes our perception of ourselves massively and can certainly make a dent on our self-esteem.
As much as I hate my body for having lupus, I wouldn’t be here without it. I feel that to find light at the end of the tunnel, sometimes you really have to convince yourself that good comes out of the bad – even if you are really scraping the barrel. I’m not here to convert you into a self-love guru and I’m definitely not here to tell you the top 10 ways that you can change your life. I’m here to tell you that you’re not alone in feeling like your self-confidence can be at an all-time low with lupus or any chronic illness for that matter. Strength in numbers, even though we don’t know one another – be kind to yourself, you’re doing great!
Beth talks Lupus, Confidence & the work of LUPUS UK