The Adventure of Disability life 2.0: Is Sharing Caring?

G’day my friends and welcome to another week and another blog.

Over the last few days, I have realised that writing this blog, for me, is a healing experience and a chance to be vulnerable while hopefully educating and creating discussion around disability.

The post this week is no exception. However, it is a slightly more heartfelt, deep and personal post, that I believe everyone needs to read. Whether you are disabled or not, this is a post for you.

The side less talked about

a black and white selfie of me. I am smiling softly to the camera with my hair down and hand resting on my chin

Being disabled opens you up to many things. It gives you opportunities that other people will never experience, such as concession cards, cleaner bathrooms, personal parking spaces, trips, and even flash events from time to time, but also anxiety and worries that are different to the norm.

The most common topics surrounding disability is always, I feel, positivity, medical treatments, discrimination and the like. However, there is one thing that is often swept under the rug. And that is the idea that we feel as though we are caught in a hard place. What to share with people? what not to share? Does sharing to family and friends about our struggles seem like we are after sympathy?

The mental toll in regards to external influences, events and how much to share rarely get discussed. So, I am here to talk about it, because I feel it is about time the band-aid comes off.

Is sharing really caring?

My disability means there are times when a hospital visit is needed. Old pic from 2012 after my spinal surgery walking in the corridor with a frame to support me.

Do you often find you are in such a hard place in terms of how open you should be towards others about your disability? or even how much to tell people about a family member with a disability? My friend, you aren’t alone.

I feel this is so common among the disabled community or the wider vulnerable community.

Personally, I have always been pretty open and honest with what I tell people about my condition. I do however leave out the more TMI details for obvious reasons.

Although, what I have realised in the last few years is that not everyone will willingly receive or listen to what I tell them about my disability.

For example, I have had people get up and leave the conversation if my bring up the mortality side of my condition. They don’t want to hear that because it makes them uncomfortable. At times I think what they don’t see is that in order to see the disability and see what I go through, they also have to be willing to hear it all. But at the same time the last thing I want is to make someone uncomfortable. But whose expense does that fall to? Mine or theirs?

I have found if I share too much, most people like to use the pity card. That is the last thing I want or need (most times, a pint of ice cream will be more than fine instead). What I crave for most is having people listen, and perhaps try to understand a little. That is all part of raising awareness right?

The other side of the flip coin, which people have obviously also experienced, is if you are too closed off and not share enough information or ask for help enough. People tend to not understand what the big deal is should something arise (like what is going on now in the world for example). They simply don’t understand the gravity of the situation. So then is it up to us to make them understand, or should they come to us and ask questions or check in??

A Message for my Disabled Friends

commonwealth games. me and my dad are siting with are backs to the camera, watching the line up of the wheelchair race.

There is one thing that you will often get told very early on in your diagnosis, regardless of when that occured. You will know who your close circle is, and sometimes that will not be the people you expect, when it comes to challenging moments or adversity.

You cannot control how people respond to your diagnosis or any other thing you may need. They are their own person.

You may be at odds, like I said before, on how to share with people your disability story, how much you tell or don’t tell. It is tricky. You want to keep the most private things to yourself (whether that be toileting or showering or health risks or anything else you don’t really think about sharing), which then leads to confusion when a time like a world virus comes along, and they don’t understand your paranoia. When you decide to be vulnerable, they run away because they struggle to comprehend what you are going through, and believe if they don’t know about it then they don’t have to know or deal with what you are going through. But, you shouldn’t also feel obligated or forced to share details of your situation if you haven’t reached that pace yet. See isn’t it tricky?!

However, there is a silver lining though, you will find the circle that is right for you. That will come from people within the disability community and those who are prepared to listen and understand and be there for you no questions asked. Be open minded, and know that people come and go from your life for a reason, but it is not your fault.

It is not your fault that people do not understand or don’t want to understand. For some it is natural to listen and understand, but for others they are simply not able to give you the understanding that you crave. And that too, is not your fault.

To those in our circle

a dark photo of a group of people watching the sunrise.
Photo by Daan Stevens from Pexels

I wish to end the blog this week with a message for those who has disabled people in their circle. Learn to listen. We have stories and a journey we need to share with you.

I am so grateful for you all that you are able to lead your life with a bit more ease than those like me. I hope you all never have to go through life being paranoid over your health or be anxious when going out on the town or to school. However, also acknowledge that there are people around you who need a little extra gentle care.

Things that we share with you may not be easy to listen to, but that doesn’t mean that they aren’t real and shouldn’t be validated. We need our circle to be willing to understand, even though things may be confronting or confusing, that you can come to the table and give a helping hand or ear. Because who else can we turn to? When it comes to things like we are facing today, that is the perfect opportunity for you to listen and learn. You may be shocked at what you discover about the person next to you, or yourself.

Till next time,

Rhi xo

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.