Every minute of every day, 684,478 pieces of content is shared on Facebook, 3,600 photos are uploaded onto Instagram and 6,000 tweets are sent every second….and a proportion of those uploads relate to Vitiligo.
As a child, one of the hardest things about having Vitiligo, was not knowing anyone else with the condition. No one in my school had the condition, I didn’t see people pass me in the street with Vitiligo and I certainly didn’t see pictures on the internet because it didn’t exist! The emergence of social media changed that when people were given the opportunity to connect. When groups such as the Vitiligo Society, Vitiligo Pride and embrace your Vitiligo were formed, it became an awakening to the fact I really wasn’t the only suffering with Vitiligo.
Being in the UK, I’m part of the Vitiligo Society Group and today the charity has just under 4000 people within its community, with joiners from the UK and beyond. It’s a supportive group where people can open up, share stories and ask questions about treatment or anything they may be concerned about. After all, if there is anyone who can answer a question about Vitiligo, it’s a fellow Vitiligan! It’s an insightful, yet amazing group to be apart of and I for one have benefitted from some of the information shared about treatment and new research. I love seeing people upload photos showing off their patches with pride! To me, it signifies acceptance, confidence and the ability to love yourself even if you are different. It’s inspiring and reminds me of the importance of loving the skin you’re in.
Whilst most of the content in groups is incredibly positive, unfortunately, a few weeks back I came across something I didn’t like! As I was scrolling through the society page, I came across a touching post from a lady who had recently developed the condition. From how she spoke, you could sense she was struggling to come to terms with her changing skin as she spoke about her experiences with Vitiligo. She pointed out that her biggest concern was the difficulty in obtaining a diagnosis by her GP, the effectiveness of camouflage cream to cover her patches and the best products available for protecting her skin against the sun.
I read her story with sadness and was tempted to reach out. Having had Vitiligo since I was 2 years old, I know no different. However, I have often felt that it must be incredibly hard for someone to develop Vitiligo as a teenager or adult, as they are experiencing the change right before there eyes. As I was reading some of the comments left by others in the group, I came across a response by a rude and insensitive man who suggested she should ‘accept and move on’ like she was behaving like a drama queen!
I was completely dumbfounded by the insensitivity that he was showing towards a lady that was clearly feeling vulnerable. I wanted to respond back in frustration however, rather than typing frantically I decided to answer here instead….
Just Forget About It…..
The one thing someone with Vitiligo cannot do. We see our patches all the time…they are visible to us 24/7. And whilst some people can accept and love their spots, for some the journey towards self-acceptance hasn’t quite reached them yet. It took me years to accept the way I looked and I can honestly say, it was a lengthy journey with many ups and downs. For some, Vitiligo cannot be forgotten about. You’re always worrying about the next patch or whether your skin is well protected during the summer. It’s not just about what you see on the surface, how you are dealing with it on the inside is equally important.
Do Your Own Research….
This was in response to the lack of knowledge from GP’s and Dermatologists. Now, whilst I agree that obtaining a diagnosis can be incredibly difficult (especially back in the 80’s when I was a little girl!), we have come a long way in that Dermatologists and GP’s are more able to quickly identify if someone is developing Vitiligo because it has become more widespread. Medication, although still very limited, is more likely to be instantly prescribed without lengthy delays and multiple appointments to your GP. Yes, I agree we should all carry out our own research as there is plenty of information available outside the Doctors surgery, but I personally think anyone’s first point of call should be the Doctor.
Get Over It..
How awful does that sound! This is one of the worst things you can say to someone who has a skin condition. No one has the right to tell someone to ‘get over’ something that clearly affects them. Having a skin condition is a very personal battle and whilst the biggest tower of support is being around others with the condition, you are still ultimately managing the condition on your own. Someone who has fairer skin will have a completely different experience to someone who has darker skin, mostly because patches on darker skin is more
noticeable. Everyone deals with Vitiligo in their own way therefore no one has the right to suggest its something they should ‘get over’. Sorry to say, buts it not that easy…
Have you even come across someone with lack of empathy on social media? Feel free to share….