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Being a chronically ill fashion blogger

oliviahcole Community member Posts: 1 Listener
edited October 2021 in Everyday life

Hi everyone! My name is Olivia Cole; I am nineteen years old and have suffered with Myalgic Encephalomyelitis (M.E) and Postural Tachycardia Syndrome (POTS) for nine years. This means I feel constantly exhausted and struggle to leave the house. Being chronically unwell takes up my whole life, but on better days I try and run my blog, Olivia H Cole, to keep my passions alive, whilst also trying to keep some normality to my life and have a moments escape from feeling unwell.

Fashion, makeup and photography have always been passions of mine from a young age, so blogging’s always been such a fun way for me to explore all three. Growing up around my mum and nan has fuelled my love for the fashion of their eras and mixing the old with the new, and this is what I do on my blog: model pretty outfits and makeup looks, share with people where I found them and interact with others…

Well that’s how it should be, but chronic illness means that things don’t often go to plan.

black and white image of long haired girl looking to the left and wearing sunglasses an off-shoulder top and jeans stood outside with vast fields in the background

My mind is constantly full of ideas for photos and perfect places to shoot, but instead of the greenery and forests around Essex I love visiting, I’ll end up standing against a white wall in my bedroom. Outfits I buy sit in my wardrobe for weeks until I have the strength to put them on- I know I can’t leave them for too long in case they go out of stock before my followers can get their hands on them. 

It may seem strange that something as simple as getting dressed is such a task for me, because my disability is so unapparent. The illness has always been so internal that when it comes to getting medical help, I’ve found myself having to sell an image of myself that I don’t like just to feel believed. This goes as far as never wearing makeup or outfits that make me happy to medical appointments, accentuating my pale skin and glassy eyes to make clear that something’s wrong. I’ve learnt to do this from past experiences, where doctors complementing me on how well I looked led to a lack of trust when discussing my health. When you’ve only got so much energy, you have to make things more transparent than usual just to feel understood. Wearing makeup ended up becoming a way to help me feel like myself again. 

full length image of olivia wearing a dark green jumper star necklace jeans and boots with trees and woodland in the background

Looking over photos of me on my blog, it can sometimes feel like seeing images of someone else. But one thing I’m passionate about showing online is that you don’t need to look unwell to be unwell. We’re making progress, but there’s still a long way to go concerning the stigma around invisible illnesses: I hope that my awareness campaign, CFS Selfies, will help to inform and educate people on this issue too.

After nine years of being unwell, I’ve reached a point where all I want to be is me. There’s more to somebody than their illness and it’s not their responsibility to portray different versions of themselves for the sake of others’ ignorance. If my experience and blog can help others going through the same situation to never forget themselves, then I’ll have felt like the hard times have been worthwhile.

Can you relate to Olivia’s experiences? We’d love to hear your thoughts in the comments below!


  • Mommy_P
    Mommy_P Community member Posts: 1 Connected
    I feel this all the time. People can’t imagine constant pain so they underestimate it. ‘You’re letting the pain beat you’ a physio told me once when I couldn’t get up off the floor after trying to do some of the exercises.
    I used to make the effort with make up, getting someone to help shave my legs and clip my toe nails etc before appointments. Now I don’ because they assume I must be doing it.  Now I let them see what life is really like. 
    Thank you for your story. It’s easy to feel alone x 

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,790 Championing
    Welcome to the community, @Mommy_P! You may be interested in our invisible impairments discussions too.
  • Topkitten
    Topkitten Community member Posts: 1,285 Trailblazing

    It is such a shame when such a pretty young lady suffers the way you do. People your age put such stock into appearance and are also the age group least likely to understand as youngsters always feel they will live forever and never suffer the ravages of age and infirmity.

    I am told I am still attractive by some ladies but never feel so myself because I know just how damaged and destroyed my body and abilities are. I go through periods of trying to make myself look good again but it never lasts long before the support I need from the NHS yet again fails to meet my needs. Long term or permanent disability is never supported well.

    Please try to find the strength and capability to keep going as you deserve to be treated well in order to have a life fulfilling and wonderful.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Redbarron
    Redbarron Community member Posts: 3 Listener
    I try my best with my chronic pain people look at me and say how well I look .if they knew the battle I have everyday 
    If I had a broken arm or leg they would see it but invisible chronic pain I hide well .be who you are not what people expect you to be ?
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