This article is part of My Plan Manager’s guest blogger series.
Slowly losing your independence because of disability is a hard thing to face. As my disability starts to decline, every day tasks become harder to do. As another illness comes things like pain and fatigue increases, making you dependent upon other people to help you with tasks you once took for granted.
It’s nice to have people come and help you, but you lose control.
You no longer necessarily have a say in the way things are done. If people are unavailable to help you, you can’t complete the task by yourself or you can but with great difficulty and compromise to your health.
I am thankful for support workers. It means that I no longer have to struggle with tasks around the home. However, with the use of support workers comes the sharp reality that you can no longer do things by yourself.
At first, I use to help my support workers as much as I possibly could, only to discover I ended up more fatigued by having them there. It defeated the purpose of having a support worker, if I was going to help them and then have my conditions be made worse.
So, slowly I relinquished the tasks I found difficult to do.
Although it’s nice having people do these tasks for you, you’re also left with the pang of the realisation you can’t do that for yourself anymore. You know that it is for your good that other people do those tasks, so that you don’t jeopardise your health by doing those tasks unaided. But at the same time you feel robbed of your independence.
You feel that you no longer necessarily have control over how things are done.
Yes, you can instruct people, but they may not listen to you. You are left feeling dejected or angry that you’ve lost the ability to do a simple task like make your own bed. You know you have two options: either fight through the pain and do it again yourself or accept the reality that the standards may be different to what you are familiar with and be thankful that you didn’t have to do it yourself.
On and on it goes, this constant battle between your will to do something by yourself, versus the reality that doing the task will be detrimental.
Despite feeling like I have lost my independence, I have found having support workers extremely helpful.
It has meant that I have more time to focus on maintaining my health, whilst feeling like I am contributing to the running of the household to some degree. It has given me independence from my family having to help me with every task, but with it has come the reality that I have lost some of my independence. It has taught me to be humble and ask for help when I can’t do things by myself, and that it’s okay to accept the help that I need.
Briar has cerebral palsy, two mental health conditions and a number of other medical conditions. She has trained as a social worker, as well as a policy writer but her disabilities have prevented her from developing a career in these fields.
Briar hopes her writing can encourage others in a similar position and provide them with useful advice. You can read more of Briar’s work on her own blog Strength, Dignity, Hope.