Behind the scenes ~ I have followed Ahila on Instagram for a while and love her positivity surrounding her psoriasis and body image. When I decided to interview people for this website, she was someone I was keen to speak with. I hope you enjoy her story as much as I enjoyed interviewing her…
Thanks very much for agreeing to be interviewed for the website. Can you start by letting the readers know your name, age and where you’re based, please?
My name is Ahila Jegerajan, 37 years old and I live in North West London. I am Australian and have been living in London for the last 11 years.
Fab. Thanks Ahila. I love Australia! Visited in 2004 and can’t wait to go back. Everyone interviewed on the site has some connection with facial disfigurement/ visible difference. Can I first ask which term (if any) you tend to use and what connection you have?
Well, I have a condition called psoriasis which is an autoimmune condition where skin cells regenerate every few hours instead of every 28 days. I never say ‘my psoriasis’ or anything which gives ownership. I don’t particularly want to ‘own’ my illness in that regard. I accept the situation for what it is but don’t want to create a dependency on it.
I do refer to it as a visible difference, simply because that is how I see it.
Your positive attitude and passion for self-love and appreciation literally leap off your Instagram page! I love it
Ah, thanks! ?
So, can you explain how it first developed?
Medically there are various reasons as to why psoriasis develops – a huge stress on the body due to perhaps trauma to the skin or an emotional upheaval. For myself, I was going through a stressful time during university and it started as a small legion on my scalp. I assumed it was dandruff and ignored it for months! When the legion started to get larger I finally went to the GP where I was diagnosed.
For the first few years, it was only ever on my scalp. I never really had to confront my appearance and how to feel confident because it was all rather hidden amongst the hair!
And when did it develop further?
It started coming onto my hairline and ever so slightly onto my face after I had my first child – being chronically tired with a newborn put more stress than usual on my body.
It has been up and down for a long time. I’ve been given medication to control psoriatic arthritis that comes along with it for a small % of patients. During those times my skin would clear because of the medication but the side effects would take its toll.
Ahhh so you swap one issue for another? That must be frustrating
Yes – when I was diagnosed with arthritis at 24 I was in complete shock.
I was so young and so involved in sports. I had to stop it all because I could barely walk at times.
In 2013 I decided to stop medication and seek a better quality of life. I was very aware of the risk of the skin glaring again but by that stage, I had two children and being mentally clear, focused and energetic (the medication made me a bit groggy and so tired) was more important to me than clear skin.
It has been a LONG journey for me to be physically strong again. I still have further to go but I am just very proud of how far I have come – both mentally and physically.
I think they can both be real struggles on their own. The mental and physical aspects of any diagnosis.
Being diagnosed at 24 was a slap in the face.
At first, I resigned to the diagnosis and was very much defeated. Later at 29 years old, I was told the arthritis was so bad that I would need to be on medication for life. This meant I couldn’t have another child bc the meds were so strong…
Again, I was defeated and for approx 2 months I would cry and generally feel sorry for myself.
After a point though I do remember wanting to pull myself out of it.
I can imagine! Lots of people would be stuck in that place of sadness but you’re not. How did you change?
I had one child and one is better than none. So I started shifting my thinking. I focused on what I did have. I committed to Swimming one mile for charity for my 30th birthday and asked everyone to sponsor my swim instead of buying me a birthday present. I chose to give all the funds to Save The Children – I figured if I couldn’t have another child I could ensure that for those already this earth, that they are well cared for. Swimming 3 time a week in training helped me greatly with the arthritis.
Putting all my efforts towards a good cause made me feel great! Also, it completely took my mind off what I didn’t have and channelled my efforts into something greater than myself.
The end outcome: after my swim, I raised over £5,000 and the doctors said I had completely reversed the arthritis in the space of 4 months. It was a good lesson for me – out ‘limits’ are not defined by anyone but ourselves.
JUST WOW! So you have no symptoms at all now?
NOOOOO!!! No symptoms at all with arthritis!!! I get so overwhelmed when I think of where I once was and where I am now.
I even went for my first run last month – the first time in 15 years. I think I could have run earlier but I was scared about aggravating my joints. Nothing to be fearful of because I haven’t felt symptoms for so long.
Does the swimming not irritate your skin at all? I imagine swimming was good for your mental health too?
Yes! Ironically Swimming in chlorine isn’t good for the skin at all! But I think the entire experience shifted me so dramatically the irritation wasn’t really an issue.
And how do you feel about psoriasis now? And how has that changed over time? Am I wrong to assume that having a visible difference would challenge your self-esteem?
Having a visible difference definitely challenges my self-esteem! When it came onto my face I had no choice but to accept it. However, on my body, I used to hide it with clothing. It had become so habitual I didn’t actually realise I hid my skin. I always chose to wear long sleeve shirts.
I feel psoriasis has come into my life to challenge the norm. I feel it is here to help me rise above and be greater than my current circumstances.
It isn’t always easy but it has given me great mental strength.
Such a fantastic way to view it
Have you noticed other peoples reactions at all? And if so, how have you dealt with it?
Intellectually we all know that visible differences don’t make us any less capable or give us any less worth. However, with the subtle (and not so subtle) messaging these days it is very easy to care about how we look and to worry about it.
When I started wearing bikinis by the pool or short sleeve tops, shorts etc – which all showed the psoriasis legions, I did notice that people looked. However, I also know that my skin doesn’t look like the majority of people. So of course, someone may do a double take when they see me – out of curiosity or simply because they are wondering why my skin looks different.
How do you react / respond to that?
In those moments I am very aware of ‘setting the tone’. If I act embarrassed and try to hide they will naturally perceive it as something is wrong with me. However, if I act confidently and don’t care about it, pay no attention to my skin, then I find people around me do the same.
That’s such a powerful statement!
I am a Governor in my children’s school so I am constantly meeting new parents and the like. Each time I really do act like I would as if I didn’t have psoriasis. I believe this really helps set the tone for how people then interact with me.
Yes, it doesn’t take long to see the person and not the difference does it
Definitely. Of course, some people find it harder than others to portray confidence in this way – I would almost say it is a ‘fake it till you make it’ concept.
That’s a great point. What about the people who genuinely struggle to even get to the ‘fake it’ part. What advice would you give to them?
For those struggling to ‘fake it’ or now knowing where to start, I often advise just take the first step, whatever that may be. On Instagram, I will always get messages asking me how I can be so confident in a bikini and showing all the legions. I’ll tell them honestly – I didn’t just wake up one morning and decide I was confident enough to show 80% coverage on my skin! It was small steps – whatever I could handle at the time. I remember vividly rolling up my shirt sleeve to show part of my forearm – practically nothing, but it was HUGE for me! I felt like I had moved a mountain and because no one commented, or ran away from me (and whatever other horrible scenarios that played out in my mind!), it gave me a mini boost.
Starting with something small to ‘fake it’ is powerful because it starts the momentum.
Yes, and then it’s having the courage to continue and build on that?
Exactly! Some people get out off because they feel like it is too much to go from 0 to 100. But in reality, we only see the end result – we forget that there are multiple little wins along the way that build courage, help gain momentum and increase confidence which then culminates into the big win/ a new habit.
Would you say you have always had such a positive and determined mindset?
Looking back over my life thus far I do really attribute my outlook to my parents. They never explicitly drummed into us that we are capable of anything etc but they did pass onto us a belief that if we wanted something we can get it. It’s all up to us. Don’t be the victim because automatically you’ll lose control and then have no influence on the outcome.
What fantastic parents. I’d bet good money you’re the same with your children?
My kids are having ALL my lessons drummed into them! ?
Haha and what brilliant lessons they are!
Funnily enough – with the media opportunities I’ve had to spread awareness and create a platform for those with visible differences to have a voice, many people would say to my kids ‘ oh you must be proud of your mum being on TV etc’. They were baffled – they didn’t understand what the big deal was about me showing my skin on TV! It was a surprising reaction but one that comforted me
And you being their Mum is all that matters.
What would you say to the people who stare? The ones who take just a little bit longer and can make people feel uncomfortable
Good question. I have never had the experience where someone stares so long that they are making a point. People do sometimes stare and ask me what happened – I often get asked if I am a burn victim. I use the opportunity to educate. My view is that it takes a lot of courage to ask a stranger what is on their skin! To be honest, I’ve never had someone ask in a negative way, or where they are saying it with disgust. I am a bit of a fiery person at times…! I’m not sure how I would react. I may come back with something slightly cutting but at the same time putting them back in their place!
Maybe that’s because you hold yourself with a confidence that shows it doesn’t define you and so people don’t feel that you are an easy target (If that makes sense)
Yes, I do really think that has had a part to play for me. Long before I had psoriasis I had confidence – I was part of the debating team at school, I was the school captain and with work, I held my own in a male-dominated industry. Hence perhaps my ability to hold true to myself also comes through on some level…?
Yes, I feel that! Haha. If someone is reading this who has recently developed psoriasis or a similar skin condition but lacks your confidence, what would your advice be in terms of acceptance and moving forwards?
First and foremost, we are not the victims. If we identify with being a victim we have lost control – I.e. why is this happening to me? It’s not fair etc.
Rather, ask yourself better questions.
What can I control? What can I do to feel better?
And always find an answer – there is ALWAYS something we can do. Even if it is as small as going to bed at a decent time so we aren’t tired and cranky in the morning – let’s face it, if we are dealing with something intense, being rested is always better.
Also, what makes us feel good – eating well, exercise, being with friends – these are all things we can control to better the quality of our life.
As for our appearance – connect with others on social media who share the same story.
So accepting, embracing and taking control?
Absolutely! Instagram has an entire movement of people with skin conditions that are showing themselves as they are – unfiltered, blemishes, skin conditions, everything. Fill your social media with those that are living each day authentically and let that be your environment. We are a product of who we are around most so be around people who have a condition but are living their lives as if they never did.
I feel like applauding!!!!!
Which hashtags should people search for to find that community?
#getyourskinout is a fantastic hashtag started by Holly Dillon. She has psoriasis but this hashtag captured ALL who have a visible difference.
And of course, your account which I will link to below ?
Thank you. It is hard to be someone other than the ‘normal’ but we need to remember that this is societies definition. Who is to say that clear, ‘flawless’ skin is normal?! Rather, it is not! The majority of us have pimples, stretch marks, wrinkles… it’s just that we have been conditioned to think those are undesirable. I look at my grey hairs and think ‘Well, they reflect the fact that I’ve been on this earth for 37 years. Some people don’t even get to live into double digits, so just be grateful that I have signs of ageing!’
Thanks so much for your time. I think you’re amazing and an incredible role model for everyone, not just those with a visible difference
Thank you Charlie
You can follow Ahila on Instagram as @naturallyhealingpsoriasis and get in touch with her via email on firstname.lastname@example.org