A Monthly Ponder: Living With An Invisible Illness

Every month, around this time, for the last 5 years, whilst waiting in a hospital room, I take a moment to ponder about our society.

 

I sit, in a hospital waiting room, scruffy hair, unshowered, no makeup. This has been my routine for the last 5 years. Because if I don’t do this, then I feel vulnerable. I know this sounds strange. I am a huge advocate for power dressing, making an effort to empower yourself. But in this situation, it’s different. If you look like you’re doing ok, you are not taken seriously.  I’ve tested this before. It’s one thing bringing the average age down in a hospital waiting room by several decades, it’s a whole other thing if you look like you are fine.

 

There’s a perception that people have, that if you look like you can get on with day to day life, then you have no worries. We are all educated well enough now to know this isn’t true. From high functioning depression, to invisible illnesses that fluctuate. But still, the stigma is ever-present.

 

In our current society, the opposite tends to happen. Due to the social media, people portray their rose-tinted life and others expect it’s their reality. People don’t feel like they can be real anymore.

 

I’m guilty of this. You wouldn’t know from my Instagram feed that I have weekly injections and medication to keep me out of a wheelchair. That I have three different medical teams who dictate whether I get said medication. At my lowest, I have screamed into my pillow because the pain was too much to bear, being carried and helped by my loved ones and sobbing to any doctor that would listen. At my best? I am a normal, functioning human being. By societal standards, anyway. I work full-time, I go on holiday, I socialise, I exercise. Nothing about me would lead you to believe there is anything else going on.

 

I know I’m not alone in this. Invisible illnesses have this kind of ‘put up and shut up’ situation, because no-one knows how to behave to someone that doesn’t look like they have a disability.

 

Due to a lack of global evidence, the numbers of people suffering from invisible illness is hard to calculate. At least 5 million people worldwide have lupus. At least 1% of the world’s population has rheumatoid arthritis. 350 million people suffer from some sort of depression. And this is just 3 examples. These are not small numbers. These voices need to be heard.

 

The only way to tackle this, is to stop with the judgement. Don’t presume to know someone because of what they look like. We all fight our own battles. Focus on that instead.

 

This isn’t my usual type of post; I shy away from speaking too much about this because I’m scared of putting it out there that there are times that I can’t function ‘like a normal human being’ – whatever that is. But this has to stop, because by not speaking up, I am guilty of the same crime that so many of us fall victim to.

 

It helps to understand. I’m sure you know at least one person that has an invisible illness. It’s not always easy being supportive when you have no idea how you are supposed to act. These are a few of my favourite blogs that have helped me throughout the years:

Statistics:

http://www.resources.lupus.org/entry/facts-and-statistics

https://rheumatoidarthritis.net/what-is-ra/ra-statistics/

http://www.healthline.com/health/depression/facts-statistics-infographic

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