Updated: Nov 28, 2021
When I initially sat down to write this post it was a real struggle. I was trying to write about disability and independence from my point of view, as a friend of Ally and Beth’s after travelling with them around Europe for four weeks/spending way too much time with them at home, university, and the QEUH. Like you, I was stuck in understanding the importance of independence and how disability can affect it and be affected by it so much. Luckily Ally and Beth have wonderfully explained the key issues surrounding this topic, so I don’t have to.
Having a lack of independence is a tricky one to get a grasp of when we don’t have to surrender it for our health. But as a great friend who is reading this blog post, hopefully you can be a bit more empathetic and understand you can support your friends being independent, strong, amazing human beings. As a friend you’re in a position where it is not your responsibility to ‘take care’ of your friends with chronic illnesses but you should make it your responsibility to help enable their independence. By this I mean that you should look out for your friends to the point where it doesn’t impede on their independence or boundaries.
It’s difficult to write this from an objective perspective as the situations I have been in can be, and most likely will be, different from any situation you could find yourself in. However, I have crafted a few tips and tricks that might be useful to know if your friends are struggling with their disabilities:
Have patience - This is probably the most important tip. If you allow your friends to set the pace that you walk, break when they need to break and take the time to understand and empathise with their situation – which leads me onto my next tip;
Talk – Don’t be afraid to ask any questions (within reason) about their disability, the more you talk about it the less they feel like a burden and the more you understand. Ally and Beth could not count the amount of questions I ask on a regular basis – even after all this time there is so much, I don’t know and that I’m learning every day.
Never tell them what to do – this may sound simple and rather obvious but sometimes you will find yourself where your friends will choose to do things that will impact their health and because you care you’ll try and stop them. As you might have inferred from the previous blog posts, there is constant conflict between independence and health and people living with a disability (especially when they’re young) will be trying to test and rebel against their boundaries. You need to let them do silly things that can impact on their health because it's not your job to parent them.
Sometimes your friends will depend on you for support, and that’s okay. You should be a metaphorical (and sometimes physical) crutch for them just as they’re there to support you through the good, the bad, and the ugly. We all have to sacrifice our independence at certain pints in our lives. Just as I rely on Ally to send me the lecture notes that I missed from our 10am’s or bring me breakfast when I forget it, and Beth to make me smile and answer all of my random questions about medicine and the world
Cherish your friends.
(Originally Published 18/8/19)