This post is a little delayed – as ever! Last month I was talking about one of my other autoimmune disease Hypothyroidism so now I am going to dive right in and share my other autoimmune disease.
A lot of autoimmune diseases such as Ulcerative Colitis and Hypothyroidism are referred to as an ‘invisible illness’ because the symptoms are internal, however I have one of the autoimmune diseases that is ‘visible’ and that is vitiligo.
Vitiligo is a long-term condition where pale white patches develop on the skin. It’s caused by the lack of melanin, a pigment in the skin. Source: NHS
This lady here Winnie Harlow has become quite the advocate for vitiligo in recent years. Winnie is a model who was discovered by Tyra Banks on America’s Next Top Model – a real first and pioneering moment in the show – for us ‘sufferers’ anyway. For women such a Winnie the disease is more prevalent than in others due to her skin tone, I naturally have an olive hue to my skin, so my vitiligo is quite visible, particularly in the summer if I’ve been away.
I have what is known as symmetrical vitiligo, where the patches are mirrored on my body, for example I have matching spots on my feet, ankles and knees, as well as bikini line area, elbows, hands and eye lids. I would say about 30% of my body is covered, and luckily for me, in areas where I have been able to cover it up with ease.
I vaguely remember being aware of my vitiligo when I was 7 or 8, but then again I can’t really remember, but the moment I did start noticing it, or when others noticed it was my first week of secondary school. Writing this is still quite raw for me, which has come as a huge surprise, I don’t know why, but the feelings I get are embarrassment and I just want to shy away from it all. I truly believe that is because of the way society has made me and many others feel. But anyway, it was during this first week where we had our first sports lesson, it was a late summer so I wore some culottes, where you could visibly see my paler patches on my knees. The teachers had never seen anything like this before, so they took me to one side and asked what it was and was it contagious? I mean looking back now, I want to cringe so badly, but nonetheless I must have explained that no it wasn’t, and I swear to you that was the last time I wore culottes or really got my knees out again. If I did, it was a whole ordeal of concealer, fake tan, nude tights – the absolute works!
I don’t think I ever became comfortable with my vitiligo until 2011 when I met my boyfriend, or more specifically my boyfriends mum Caroline. Her vitiligo is more obvious than mine, and when you have vitiligo you have a tendency to spot others with the disease more easily. But it is also worth noting that her vitiligo hasn’t always been ‘obvious’ but due to pregnancies (3 to be precise) hormonal changes can accelerate the vitiligo. Anyway, I digress, so it wasn’t upon our first meeting when I launched into this, it was about a month or so down the line of being with Tom. It was the start of summer and we went to Richmond to watch Tom play rugby, whilst he was playing I think I plucked up the courage to mention something about the sun, as it was quite sunny that day, and Caroline said oh well I can’t sunbathe because of my vitiligo (this was about 6 years ago so this isn’t verbatim) and I said oh I have vitiligo too! I knew exactly where the conversation was going and I was pleased, and it gave me something to bond about, in a weird way, with Tom’s mum. So the confidence came because Tom is the one and only boyfriend who I have been able to be myself with, I wasn’t embarrassed and I didn’t have to explain anything or what it meant – because BONUS he already knows!
In terms of treatment, there is an abundance of research into X,Y and Z. I’ve tried being gluten free, steroid creams, supplements and acupuncture to no such results. I have now gotten to the point where I have stopped trying or even caring because quite frankly just embrace it, don’t try and change who you are, it is natural and non life threatening.
I know this journey is harder for others than it has been for me, but it did take me a good 10 years to truly be ‘ok’ with vitiligo.