It is equally important to find ways to turn aspects of your life into your passions, as it is to find things that’ll help you decompress and have fun. These are traits that are massively important when you are growing up as a young person with a chronic illness/disability, and traits valuable to our next Spotlight Story Program writer, Elina Passant. A teen from Australia, Elina’s lifelong journey to her diagnosis of hypermobile-Ehlers Danlos Syndrome and other health issues like profound deafness and neurological conditions, has shaped her perspective on life and what she finds important in enjoying it. That’s why she build her own social enterprise brand, Chronic Youth Australia last year and been part of InvisiYouth’s leadership as an IY Apprentice, and why she also advocates for young people to find hobbies outside of their health issues so they can feel well-rounded and supported as the full person. Elina’s advice through her life journey will give you tips on sharpening your perspective to live your best life!
Hi lovely people, I’m Elina. I am 19 years old and currently living in Cairns, Australia. I started my blog JustSoElina four years ago after becoming bed-bound due to my illness and I founded Chronic Youth Australia, a social enterprise apparel brand, in 2020.
My health situation seems like a never ending spaghetti ball we are trying to unravel but what we do know is that I was born with Ehlers Danlos Syndrome. This is a rare genetic condition that affects the connective tissue throughout my body, therefore it affects pretty much every system in my body. I have the hypermobile type also known as hEDS.
And over the years I’ve developed:
- Postural Orthostatic Tachycardia Syndrome, also known as POTS, which is an abnormal increase in heart rate when sitting and standing.
- A Traumatic Brain Injury, this one’s pretty self explanatory (and note to self: don’t fall on your head…it never ends well!)
- A neurological condition that caused partial paralysis mainly now in my face and from the waist down. I’ve spent the past year relearning to walk as a result of this.
- Profound Deafness because I lost my hearing unexpectedly in 2020 due to my EDS. I’m currently unable to tolerate any type of hearing aids
- And a visual impairment. I’m currently considered low vision, but we are working on improving it.
I’ve spent more of my life sick than I have “healthy” and I use that term loosely as technically, I’ve always been sick. I just wasn’t always aware of it. It’s kinda crazy to think that I grew up believing that everything I felt was entirely normal, that everyone else felt the same way I did. It wasn’t until the symptoms started to exacerbate and become too intense that I became more vocal about it. And ultimately through that, I began to realize all those feelings were not as normal as I originally assumed.
Those feelings were all symptoms of Ehlers Danlos Syndrome, but I didn’t know that until January last year…almost 10 years after I first spoke up about how I was really feeling.
Delayed diagnosis unfortunately is a lot more common than you’d think, not everyone that is chronically ill is able to access proper diagnosis. Dismissal in the medical system is a HUGE issue that sadly many in the chronic illness community have faced at one point or another.
Especially being a young person with a chronic condition, it’s easy for our symptoms to be dismissed as hormones, mental health issues, acting out or something we will simply “grow out of.” This honestly messes with your head so much. I’ve spent so much of my life questioning myself and my body’s natural instincts. I lost complete trust in my own body and mind due to everyone constantly telling me it was all in my head, that I was doing it to myself.
This was my main reason fueling creating Chronic Youth Australia, to help reach kids and teens like myself that grow up feeling like what’s happening to their health is their own fault, or not understanding what’s happening in their own body and why. It’s important to create a sense of community and connect to others that understand the world through your eyes.
It’s important to help educate others, open up the conversation around our health, advocate for our needs and give actionable tools to help support others so we can help break down the stigma and isolation.
Chronic Youth Australia still very much in the beginning building block stages, but having something to focus on that’s not my own personal health situation that I know could possibly help make even one person’s day a little brighter, helps in more ways than one. It gives me things to look forward to and work towards, as well as a source of happiness on the harder days.
It’s so important to have things outside of your health, doctors appointments, therapies or treatments. They give you a form of distraction, allow you to switch off for a little while, and just decompress. And most importantly bring you a sense of joy. I love working on Chronic Youth Australia. It’s a huge creative source for me.
But I also make sure to have outlets that are completely separate and unrelated to anything to do with chronic illness. Sometimes it’s easy for the lines to blur when it’s something I’m so passionate about and I’m so used to my own health being my main focus.
I never intended to ever speak about my health, or become at all involved in the chronic illness community let alone advocating. I find it crazy to believe that I’ve been sharing about my health journey publicly the past few years. I always held a lot of shame surrounding my health situation, always scared of what people would think of me. It’s still something I struggle with. Healing isn’t linear, I never want to come from a place of acting like I’ve got everything all figured out and managing it easily because I’m not. I don’t think anyone fully is.
Life with a chronic illness and or disability is a bit like a roller coaster ride (or for those who also understand life with POTS, life can be as stable as our heart rate readings). There are days where you feel like you’ve got it under control, that you can totally manage it and anything else thrown at you because life feels good. And there are others when it’s like a switch has flipped and everything and anything is too much and pulling you down.
We may have superhuman abilities for dealing with as much pain and illness as we do on a daily basis whilst still going about our lives, oftentimes acting as if nothing is happening at all. But we are still human, and it’s okay to act like it.
I recently read something that stuck with me: “If a healthy person became unwell with even a few of the symptoms I deal with everyday, they’d rest and do the bare minimum until they were better. But because my symptoms are forever, I’m expected to live life as normal no matter how sick I feel.”
So if you take anything from this, please just know you are doing so incredibly well to cope with everything you do. Even if you don’t feel like it right now, I promise you are.
If there were any things I wish I’d known when I was younger, I would say:
- You are your biggest advocate, no one will ever fight as hard for you as you will yourself. Not in the sentiment that others don’t care, but it’s important to remember you know your own body better than anyone else and you’re the one having to live with the symptoms. Use that as your fuel.
- Take the time to discover a healthy emotional outlet to help you work through and express your feelings and emotions both mental and physically. I’m only just beginning to understand how my own physical illness (having multiple conditions that mess with my nervous system) impacts the way my body copes with the mental load. My outlet has always been writing, though never in a journaling sense, more creative writing and experimenting with different writing styles as there truly are so many. For others it may be talking, creating, singing, playing an instrument, adaptive sports, or listening to music. Anything that helps you feel a little lighter afterwards. Being chronically ill can be a lot. It’s important to take care of your mind as much as you do your body!
- Don’t be afraid to connect with others. I was so afraid at the start to get involved with the chronic illness community or join any support groups as I was scared people would judge or think that I didn’t belong because I lacked a formal diagnosis. This is so not the case. I can honestly say I wouldn’t have gotten my diagnosis if it wasn’t from the help and information I received through my friends and our local EDS support group.
- Not everyone is going to understand what you’re going through and that’s okay. Don’t use the energy you have try and to get them to perfectly understand. Save that energy for the people that want to understand and support you just as you are.
You can check out the Chronic Youth Australia-x-InvisiYouth Collaboration hoody designs and graphic tee collaboration with the “Rise Up, Speak Up” designs (50% of profits are donated directly to InvisiYouth Charity) here.
Our other original designs are aimed to help advocate for yourself and others in an everyday subtle way, check it out here.
50% of the profits from all our products is put towards creating resources to support youth with chronic illnesses and disabilities!