The Support Worker Paradox

A kitchen bench with huge plastic containers filled with fried rice and chicken soup cooked by a support worker, in front of a bunch of spring onions.

Letting support workers into your life as a Disabled/Ill person is challenging. Not only are you asking them to do tasks you would usually do for yourself, you are inviting complete strangers to your home to view you at your most vulnerable.

What if you don’t get along? How do I employ someone? What if they’re set in their ways, and don’t want to adapt to my circumstances? What if their profile on HireUp talks about how they think children with disabilities are a blessing from God who inspire them to get out of bed every day?

That’s not even mentioning that with ME/CFS, being around people and stimulation in general is my kryptonite?*

Since mum’s circumstances have changed so dramatically due to a new diagnosis, we now have 4 support workers (or PAs) come to us a week, plus garden/yard maintenance. We are lucky to have gathered such an understanding team around us, but it took so much time and energy to accomplish. I’m still not quite comfortable with having new people in my space, and this new life.

*Hence the title of this post: am I so sick that I can’t do things for myself, but can’t stand having people around doing them for me either?

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic disability advocate.

3 thoughts on “The Support Worker Paradox”

  1. I know this isn’t the same, but I wanted to share 🙂

    I share my home with my ex husband (yes, it’s awful, but on the plus side he actually gives me money now to pay rent and bills, instead of leaching off me).

    Anyway, he won’t clean, and I hate cleaning in front of him, so for a few years when I had consistent income I had cleaners, which had an amazingly positive effect on my mental health. Sadly, the excellent ones never stay as long as you would like, and it’s awful to get rid of the odd and bizarre ones.

    The weirdest one must have suffered badly with OCD, because she spent half the time rearranging my book piles in size order. I read a lot, and I still have more books than I will probably read, but she did this every time, and never managed to actually finish cleaning the house. Goodness knows what she told her friends!

    Eventually I stopped getting the house cleaned when I couldn’t afford it any more, and my absolute favourite cleaner got a better job.

    I understand you – there’s so much trust and embarrassment when welcoming someone into your home. I hope this experience becomes nothing but supportive of your physical and mental health. We all deserve that.

    Like

  2. It makes so much sense. I don’t have personal experience, but I can imagine the frustration of not having full mobility, for example, and needing to rely on others. Even when they are people you trust (and for some, who they love!).

    I’m so glad you two have a care team in place. I can only hope that one day, we (as, in, people) will create support systems that allow all to thrive.

    Liked by 1 person

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