Accepting Help as a Disabled Person

For me, having to accept some level of help from other people with my intimate care is perhaps the worst part of this human experience, especially because I will often feel like it’s some burdensome obligation. I am very deeply aware that this isn’t how adulthood is supposed to look like, you know? With that said, I have been trying so hard recently to become more independent, very stubbornly deciding that I will simply refuse to let my disability prevent me from fully living life. For the most part, I had been succeeding, too. I mean, just a few weeks ago, I was able to cut up one of my dinners without assistance from anyone else. Not very well or anything, but it still felt like reaching a big milestone. Every day was getting better, until I started to believe that the possibilities were endless, with the right amount of work.

Over the past week or so, however, my body has been giving up on me a lot. This isn’t something that I’ll be further discussing publicly right now, simply because it wouldn’t be good for my mental stability, though it has been heartbreaking beyond words. Learning to manage these new expectations has been far from easy — and my brain has been consumed by how cruel it feels. Disabled and chronically ill people are never allowed to get too comfortable with progress in their health. It is impossible to tell how long it will last, so any glimmer of hope can often be devastating. For the record: this is something that we are allowed to feel sad about. That doesn’t give everyone else the right to ignore the good parts of our lives, as if they don’t exist at all.

A screenshot of a Tweet by Ru (she/they), which reads: “the sheer frustration and disappointment at your body when you want to do something but physically can’t because of pain/fatigue is something that can never be adequately explained to a non-disabled person”
It is very easy to feel trapped. I’m not going to pretend otherwise. I’m not always going to have a Good Day.

If it matters at all, I do intend to fight back. I have worked too hard at loving myself to let this ruin my belief that the future can still be bright. But in many ways, that’s not really the point. This fight can be (and is) an exhausting one. It’s not something that I was ready to work with, particularly when things were on such an upwards trajectory. I have every right to take a moment, you know? It can be important to sit with the emotional turmoil on occasion. I will not shy away from talking about the Bad Days in order to make my existence more tolerable for everyone else. Looking back, I’m proud that I can do this now, safely in the knowledge that I’m not defined by these moments. I have never had that before, so I’m absolutely not asking for sympathy. Please, though: I am so happy that the pandemic is largely getting easier and I have even braved visiting a garden centre now(!!!), but let’s not forget that this can be difficult. The world has never been entirely safe for disabled people, but that is especially true in this moment. Let’s take small steps towards better, without forgetting that this can also be associated with a lot of anxiety. Let’s be gentle with each other and not completely abandon virtual interaction. I understand that it is getting tiresome for some, but it’s also a lifeline for others, which I refuse to invalidate. Health is not a guarantee, people.

Éowyn, you make everything better, always. Thank-you for listening to me cry about it. You are all that is good and I love you more than anything. To my family, thank-you for being on my team at every appointment and offering hugs whenever they’re needed. More than usual lately, I know, but I do appreciate it.

Truly, there needs to be a radical overhaul of support services for disabled young people, which seem to be impossible to find. It would be nice to occasionally feel heard — and it would be nice to find a physiotherapist that isn’t entirely out of their depth when they have me as a patient. I deserve better, but I’m also not the only one.

PS: I look like shit right now, but MAYBE I’ll post a celebratory selfie when things are brighter. My body image issues are not welcome here. xoxo

11 thoughts on “Accepting Help as a Disabled Person

  1. This was beautifully written and yes celebrate each hurdle you conquer. What seems small to some is HUGE to others.

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  2. Hi Danielle
    love reading your blogs and I must admit I have no idea what its like to be disabled, so you are shining a light on a blank corner of my psyche. I love your spirit in the telling of your story, your life and all i can say is I HEAR YOU!
    big hug to you Danielle x
    jane

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  3. I am not sure where you are located, and forgive me if I have missed it. I get counseling through my local university, and right now because of the pandemic, it’s free (instead of $80/semester) because it’s all online. The grad students are great because they are eager to learn and they aren’t jaded. So far I have gone through 2 students/2 semesters. I’m in a very large city but I have looked up resources for people who have lived in cities of 50,000 people. If it’s not an option for you, maybe it will be for someone reading your blog. This is all so very tricky to navigate and sometimes so very lonely. Thank you for being open and authentic. ❤

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    1. Hello! Firstly, thank-you so much for writing such a lovely comment here. Things have been a little tougher than usual lately, so it really warms my heart to know that there are people out there willing to make it all a bit easier. I live in the UK. We can get a lot of resources for free, but the waiting lists are long and I have been wanting to find someone with lives experience of disability to talk to about everything. My GP said that she’d help me find someone to work through a physio programme with me also, but I haven’t heard anything yet. I totally know what you mean about it all feeling lonely at times. I have decided to start trying to exercise myself instead, which I’m kind of self-conscious about, but believe that it will be a good thing. I’m sure that I’ll have more to say on the subject here at some point! Sorry for rambling, but I really do appreciate you. I’m not currently studying at university (I had to leave my postgrad because illness and ableism) but it’s certainly given me something to think about. Anyway. Thank-you for making me feel seen. I hope that you’re having a good day, whatever time it is when you read this 🤍

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      1. Cheers! I have friends in the UK and have visited a bunch, so I am familiar with your system (and how backed up you are now). I’m so sorry that it’s such a struggle. I’m so sorry for all of it, it really sounds like you haven’t been able to catch any kind of a break. But I hope that your GP comes through for you soon with the next step. I started exercising recently too, and it’s really just to make myself stronger. The funny thing is that I had foot surgery last week, and when I was transferring from the wheelchair to the car, I suddenly dropped all the way to the ground – but my bad foot didn’t touch the ground at all! So I know the exercising helped! It was crazy, my friend said I dropped it like it was hot, like I was out clubbing or something. But maybe it’s better if we remember we’re doing this for us? No one else could do that bootie shake for me, even if it was an accident. 🙂 I wish you all good things, and I’m going to keep reading your posts.

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      2. You just made me laugh out loud, so I like you already. Thank-you so much for all of your kind words & motivation. I spent such a long time just falling through the cracks of our system and hating myself too much to actively fight for better, but it’s reached a point with my health now where I don’t really have much choice. I want to be stronger and more independent, too. I’m trying to believe that I deserve that much, at least. I hope that your recovery continues to go smoothly — and I hope that you can go clubbing for real some time soon, lmao. My dad has been sending me a bunch of YouTube videos since I set myself this goal, so now I have no choice but to get my shit together. You seem really cool and I’m glad that you exist ☺️

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      3. So glad to have found you and your blog! And hooray for dad as an athletic supporter – hahahaha!!! Do you think he would be okay with that nickname? First and foremost, I try to keep my sense of humor through all of this. I don’t mean to be insensitive so I apologize if I stick my foot in it at any time. I am really disappointed that your system is ALLOWING you to fall through the cracks. When I first started visiting, everyone I talked to was appalled at the concept of private insurance and becoming destitute over medical care. My friend even took me with him to his GP appointment and jokingly asked where the billing department was. It’s always up to those of us who are the worst off to fight the hardest and make it better for everyone. But anyway, thank you for your well wishes, and just know that I’m making myself a fool in front of the YouTube videos too! But no more clubbing for me. I’m an old lady. I like to be in my pajamas by 10 pm. I still listen to Imogen Heap like she’s new. 😀

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      4. I think that my dad would LOVE that nickname, for what it’s worth. & absolutely no apology necessary because a sense of humour is sometimes all we have, especially when our bodies are mean like this. Yes, the whole situation isn’t ideal and it feels like there’s no one answer that would fit everybody, though I hope that it’ll get easier someday. Until then, I will always fight in your corner, should you need it. & totally don’t worry about the pyjamas thing because I can absolutely relate!

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