The Support I Needed (And Didn’t Know How to Ask For)
Before I received this type of support, I didn’t know how to articulate what I really needed from those closest to me. It was support without pity. I hated being pitied, but I also didn’t want my struggles to be ignored or brushed aside; I wanted a balance. I wanted to be able to complain sometimes without being bombarded with solutions. I wanted to be able to stop explaining. And I wanted to stop having to advocate for myself around people who know my limitations very well.
I needed quiet support
Somebody in my corner who gets me. They know that my head is spinning at the prospect of everyone deciding to “walk to the pub tonight, a mile down the road from here”. They recognise why I am standing frozen at the top of a flight of stairs with no handrails. They know that I will struggle to spend too much time outside because the cold/heat has the potential to make me unwell for days after. They understand the numerous calculations I’m making to conserve every bit of energy, and they are also fully aware of what it takes to preserve that energy for the important things.
They show up quietly, advocating for me. Suggest an alternative method of reaching the pub before I even open my mouth. They wait and hold out their arm so I can get down those stairs safely. They ask others to change arrangements, so I don’t have to. They grab my shopping bags without prompting. They bring me that hot water bottle when I have a tummy ache, and put a cuppa by my bed when I’m feeling rough. Quiet actions without a word muttered; actions that others barely notice, that let me know they’ve got me.
I needed my loved ones to be interested
Nothing says, “I care about you” more than somebody who researches your chronic illness and is genuinely interested in understanding your challenges. It says, “I care enough to actually know what you’re carrying, not just feel sorry that you’re carrying it.”
If you have questions, ask. If I’ve told you about having MS, then I’m also ok with you asking me questions about it. I’m pretty open to talking about it. There are people in my life I haven’t opened up to because they don’t have my best interest at heart. Being nosy isn’t the same as caring about someone. You develop a radar for that ;)
I’m so lucky
And why do I know this? I’m lucky to have been on the receiving end! Firstly, by my closest family and friends. They really have been brilliant. Thank you all!
Secondly, by my husband, who deserves a special mention and, frankly, a marriage promotion! He has been a total legend this past year. He has advocated for me like never before. He has made sure that family arrangements were suitable for me, that days out are planned mindfully around my abilities/limitations, and he has picked up the slack massively with the daily mundane stuff in our home. He has done all of this without any prompting from me. He just gets it, like it’s no big deal. But it is a big deal! And anyone with a chronic illness themselves will understand what a relief that offers. So, thank you, darling! 😘
Feature photo by Andrea Tummons on Unsplash