Hello everyone!
It’s been a while since I’ve done anything on the blog and I’ve had a ton of comments and messages. I’ve been trying to work my way through them and respond, so thank you for your patience and I apologise for the long delays.
It’s amazing to think that I started this blog in 2013 at the ripe old age of 24. I’m now 32 and my relationship with my vitiligo has drastically changed over the years, but my engagement with the vitiligo community, if anything, has increased.
I thought I’d give a short update in the blog and explain where I’ve been and what I’ve been doing…
What am I up to?
The Vitiligo Society charity
For almost 5-years, I’ve been a Trustee for The Vitiligo Society, and at the start of 2020, I was appointed as interim Chairperson. The Board of Trustees are the people who share ultimate responsibility for governing a charity and directing how it is managed and run.
This is all volunteer, pro-bono work, outside of my day job and leading a 30-year old charity through a tough few years of poltical, staff and operational challenges has taken a tremendous amount of my spare time. So although the blog has been a bit neglected, I’ve been able to impact those with vitiligo on a larger scale through The Vitiligo Society.
We’ve been doing some awesome work at the Society so I highly recommend any readers of this blog to check out vitiligosociety.org and if you can afford to, consider becoming a annual member to access benefits (such as access to The VitLife online magazine), news, research and community.
Guided Meditations for the Skin
I led a project at the Society to develop a Proof of Concept of a meditation mobile app specifically for those dealing with skin conditions. We called it Skin Deep: Guided Meditation for the Skin.
We ran a successful early testing phase, and we are now at the stage where we consider what’s next for Skin Deep. The project is currently on hold due to COVID-19 and other reasons but it’s by no means dead. We built the beta on a shoestring budget and we’ll need substantially more to bring it market so we are investigating funding options. Our plan still remains to release this to the public for free.
If you’d like to know more and sign up for future updates about the app, please go to skindeep.io.
Where are the rest of the Jordan treatment vlogs?
It’s almost embarrassing how long it’s taking me to release the remainder of the vlogs that I filmed in Jordan when I went back in 2016 to treat my vitiligo. I can only apologise and say I actually find it hard to cut and edit videos of myself without cringing. I want to try and get it done at some point but just need to push through it.
How do I feel about my own vitiligo these days?
My life has changed dramatically in the last few years and other personal circumstances and challenges have taken my energy and attention away from my own vitiligo. I’ve reached a certain level of acceptance of my skin, but I am keen to continue actively treating it in order to keep it under control on my body. I live with it now comfortably, but I don’t want it to get any worse.
My plan is to return to Jordan next year 2021 and if possible do an extended stay of 2-3 months if a) COVID-19 doesn’t put a spanner in the plans and b) if Jordanian Visa’s will allow. I’m interested to know how doing a 3-month treatment stay vs 3 weeks will affect my vitiligo and repigmentation although I appreciate many won’t have this opportunity.
Facebook interview with Living Dappled
I love Erika and the work she is doing the vitiligo community. I was delighted to join her for a chat about treating my vitiligo at the Dead Sea.
Although I’m not particularly active on here, I’m still extremely happy when I hear from the blog readers. I’m grateful for the messages thanking me for the blog and videos, they are incredibly motivating to continue trying to give back where I can. If you have a general vitiligo related query and I’m being slow to respond, I recommend reaching out to The Vitiligo Society for support.
Thanks for all the support and patience. I hope everyone is staying positive and healthy during these difficult times in the world.
4 Comments
Hello! My name is Beth and I have vitiligo. I just got an email from your site. I’m grateful. I have had vitiligo for 7 years and it’s been one of the hardest struggles in my life. I have it over about 30% of my body. Face, arms, hands, feet, chest, neck and ribs. I have been suicidal and have suffered the worst depression ever. I still have bouts of depression tho I’m working hard at changing my attitude on a daily basis. Every day I would look in the mirror and be stuck for hours focusing on it. Today I don’t look as hard but some days I can still find myself falling into the rabbit hole. I am constantly looking at people’s skin and comparing me to them. When I watch tv and see people out in the sun I get jealous and sad. I want to be free to enjoy the outdoors and live life to the fullest. I know it all starts in my mind and since my diagnosis I’ve created a negative belief system that is so strong it engulfs me. The fear of it spreading, the fear that I may never feel safe outside and the longing for normal skin has changed my perspective on life. Acceptance is the key. I know this yet my mind holds strong onto the contrast and the emotions of defeat. I want to love myself entirely. I feel I cannot. I’ve done treatments. I’ve attempted to change my diet. I never give it my all. No one loves me any less but myself. I know it all starts in my mind. They say this is an autoimmune disorder and an autoimmune disorder is where your body attacks itself so I’ve realized that throughout my life I have mentally and emotionally attacked myself and now it is manifested physically. If I can change the thinking and feeling about myself to love and compassion I believe it can also manifest physically in a positive way. It’s truly the universal law. Whether I regain pigmentation or love myself as I am, that is where I want to be. I want to keep living and experiencing the joy of life. I don’t know anyone else with vitiligo. I feel so alone. Thank you for your blogs. I appreciate you and the work you do.
Hi Beth,
I apologise for the delay in replying.
Thank you for leaving a comment and sharing your story – it’s very brave of you to do so.
I too resonate with the feelings you describe. In my early 20s, I used to spend a lot of time looking in the mirror obsessing over if the patches were spreading, it got so bad at one point that I just wouldn’t look in any mirrors for almost a year because I was too afraid of how it would make me feel.
The Vitiligo Society ran an online digital summit last year – https://youtu.be/x6u6VT4DExc – I opened this event by talking about vitiligo and how it forces people onto the hero’s journey. Take a watch, maybe it might resonate with you.
A tip that I suggest to people is to create a vision board. Include on this vision board all the things you would do if you didn’t have vitiligo, all your passions, and goals that you want to achieve in your lifetime. Once this is done, integrate the vitiligo parts of your life to the vision board also and include people with vitiligo that you look up to, maybe it is celebrities, influencers or people that have accepted and celebrate their skin. Stick this vision board next to your mirror. You know it go through a process of reprogramming your belief systems about yourself. I know how extremely challenging this is to do, but it is possible with hard work and focused attention. Others love you inclusive of your skin, and it is possible for you to do the same.
What treatments have you tried so far? There are treatments out there that can often provide some type of improved quality of life.
I believe that you can both love and accept yourself but also partake in treatments to try and repigment the skin – they don’t have to be separate or opposing.
Anyway, hope this response helps you, if even a small bit, with your journey.
Simon
Great news on your part! Keep up the good work. It is a journey and its path keeps changing. I’m currently also in a different stadium with my vitiligo than I was before. But something does seem to be evolving outside of both our logic and thoughts on the matter. It seems to be spreading again for the first time in 5 years (when it all started). I’m thinking of cosmetic tattooing my whole face so I won’t need makeup to feel normal around people. I hope microneedling ink inside my skin won’t make it grow. Patches seem to be coming and going and it is very weird to observe and figure what the cause might be. I haven’t been this relaxed in my life before due to Quarantine, but the stress levels on making every day count while having no obligations does hit my enxiety. I now wish to guide my path towards dermatology. I’m tired of waiting around for someone to figure this out for me. You gave me hope and a great feeling of not being alone in this. I enjoyed reading your updates and hopefully our paths might cross one day, so I could be of help! Stay safe. Ciao
Hi Emanuela,
Thank you for your comment and for sharing your story.
I look forward to seeing what results from your venture into dermatology! And likewise, I look forward to our paths crossing in the future.
Thanks,
Simon