Community Voices

By Elina Passant

I have been chronically ill for almost 9 years and severely sick for the past 2 years. I can’t remember what it’s like to feel healthy, to not be in pain and to be able to do whatever I want easily. For ages I was just waiting, waiting for the day I was no longer sick, waiting for a miracle pill or cure or for the day I finally felt well enough to do something I wanted to. I didn’t know how I would achieve anything in my life if I was still sick. Because when you become chronically ill it feels like your life is over because the life you knew and the person you were is no longer there. Like everything in life, it causes you to adapt and grow as a person.

I received so much judgment from doctors and the people I trusted most because like many chronic illnesses and disabilities they couldn’t understand my illness. And sadly, like most things in life, people have to see it to believe it. I have never felt as isolated and alone as I did during that time. I quickly became frustrated and angry because it wasn’t my fault I was sick but it felt like I was being punished, so I just shut off from the world. It took me a while to realise that getting angry wouldn’t change anything. If I wanted people to understand I needed to actually do something to help them to make things different.

I started writing about my life with chronic illness, tips I’d learned along the way and how people can support someone with a chronic illness. The more I shared about it the more people reached out with similar stories and feelings, but also healthy able-bodied people thanked me for giving them an insight and better understanding of what someone with a chronic illness has to face. I quickly realised how little awareness there was about chronic illness and that I had created the perfect platform to help raise awareness. The aim was that through sharing my own stories and experiences I was not only helping others with chronic illnesses but also educating and helping healthy able-bodied people to be more aware, understanding and supportive of those with chronic illnesses. And through that create a safe space for those with chronic illnesses and disabilities to speak up and get the support they need, because so many people like me are suffering in silence due to the fear of being judged by those around them and society.

While being sick stops me from doing so much it’s also given me a voice and a platform I would never have had before. Having something bigger than myself and my illness has been life-changing for me and has given me a reason to get out of bed each day. I am forever grateful that I spoke up and did something to make a change.

If you could change something in the world what would it be? And how are you going to make it happen?