Hi, I’m Pia and I was diagnosed with vitiligo at age 46 which was just over a year ago. I was born in Melbourne, Australia. This is where I currently live although I spent some of my childhood in Darwin and Canberra. I grew up as a ballet dancer but transitioned to acting in my late teens. I studied at Victoria University and at The Atlantic Theatre company in New York City and I have been working as an actor and voice over artist since then, somewhat sporadically because most actors spend a lot of time out of work!

My heritage is half Italian/half Australian. My family on my Australian side have a history of autoimmune conditions with my mother and aunt both having alopecia, and my grandmother having psoriasis. I guess I always thought that I too may get alopecia, so being diagnosed with vitiligo wasn’t a huge surprise to me, although I do still worry about alopecia as I know sometimes the two co-exist.

I developed vitiligo whilst playing Survivor which makes sense as the mental and physical challenges are extreme. Dealing with the elements, feeling cold, sleeping in the dirt combined with the mental anguish that it creates is probably a perfect storm for an autoimmune condition. It was weird because we had no access to mirrors, so I didn’t see it happening in real time. I was told about it and got to see it eventually near the end of my time there. I just thought it must have been a fungus or something from sleeping in the dirt. I remember thinking how odd it was that I suddenly had grey eyebrows, but I didn’t connect the two at the time

When I came home I went straight to a Dermatologist who referred me to Michelle at Chroma Dermatology. She put me on a mix of tacrolimus and narrowband UVB therapy 3 times a week. I was getting pretty aggressive flare ups for the 2 months that I was back but as my body started to settle and it began to slow down. The treatment was pretty exhausting, but I stuck with it and I’m glad I did, although I felt like a fried chicken nugget when it was over!

I saw a Naturopath for my gut, did yoga and acupuncture which made me feel more settled. I know that doesn’t work for everyone, but it calmed me down as I was dealing with a lot of stress and anxiety. I felt like I was on a train I couldn’t get off and googling made me feel worse. I couldn’t stop because I was looking for answers. It was the worst. Also, as Survivor was screening I was watching reliving it all… it was like watching the old me disappear and a new me appear, all on TV in front of an audience.  I felt like I went through a mourning process watching it and initially I was embarrassed and ashamed, because everyone else looked fine out there and I felt abnormal. I felt sad that I didn’t get the time to deal with it in private but once I went public with it, I was so heartened by the support I received. So many people came forward and shared their personal stories of vitiligo with me and everyone was so kind and supportive, so instead of feeling shame, I actually felt inspired. I was also grateful that my eyes had been opened to a new awareness of beauty and privilege.

I had spent so long in an industry that perpetuates a narrow-minded view of beauty and is so dismissive of people who don’t fit the mould. I had spent most of my career trying to fit into this unattainable imagery and I was so busy trying to conform to it that I was oblivious to how this attitude affected the wider community.  Now I feel I can truthfully be a voice of change, as I have first-hand seen the amazing people that are disregarded because they don’t fit a prototype. I think the more our children grow up seeing differences as something to embrace, the healthier our attitudes will become. We have a pretty unhealthy view of beauty in our society at the moment and I feel like I was complicit in this for a long time by trying to conform to it. I guess being thrust into this in a public arena has helped me mentally, as there was a time when I was worried that my career was over because of vitiligo but now I see vitiligo as a blessing rather than a curse.

On the subject of treatment, I have had good results and re-pigmented quite a lot, I still have patches, but most have pigment to some degree rather than being completely white. I have a combination of hyperpigmentation and vitiligo so I’m quite patchy but I’m at the point now where I don’t wear makeup every day and although a lot of that is to do with my treatment results, mostly it’s a mental change. I still have days when I’m scared, and I feel alone or I see friends with perfect skin and I feel envious but most of the time I’m OK. I think about my kids and the guilt I will feel if they too get an autoimmune condition, but I’m working through that and hopefully I’ll have the tools to be a positive influence if it does happen. I still check my face first thing in the morning and I sometimes panic if I look at myself in a new lighting situation and see something different, but I know that’s all part of my journey.

To anyone struggling I would say don’t be afraid to reach out. It’s been the support of strangers, doctors and new friends that have gotten me through. Every kind word will help. Stories of hope and stories of acceptance will help. I think it’s hard because there are no decisive answers about how it is going to play out and every story is different but getting support from other people with vitiligo helped me a lot. Some days are good some are bad but there is no need to go through this alone. There are support groups available online and please feel free to reach out to me on social media.

Oh and don’t google!! I learnt the hard way!

Authors: Pia Miranda, Lauren Jimmieson and Tia Fijalkowski

The VAA invites members to submit their story to feature in the newsletter, if you are interested please email secretary@vitiligo.org.au.

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