It's Always...But it's Never....
It's always this, but never that, I guess this post is a bit like would you rather, but not quite.
I've seen a few notes starting with It's Always and ending with But It's Never…
So I thought I'd do my own little—yep you know what’s coming don't you?—Of course it's a listicle, I can't help myself!
I love these short snappy reads. I like how, when I don't have all of the words, when my brain isn't running on a full tank, they're easy to read and a way to write that still allows me to express some of my thoughts without having to write war and peace.
Anyhow, below are a few It's always—but it's never(s) from my perspective as a disabled mum.
It's always: Mum's always in bed.
But it's never: My mum's sick but she tries really hard on days she's well enough.
It's always: You're so strong I don't know how you do it.
But it's never: Is there anything I can do to make things easier for you?
It's always: I don't get it you were fine yesterday.
But it's never: I understand your illness fluctuates often, that must be frustrating.
It's always: You could work, my nana is 87, has arthritis, and still works.
But it's never: Wow, it must be such a financial worry for you not being able to work at just 38. I'm going to talk to my own boss about flexible working options for disabled people and start a conversation.
It's always: You know I'm here for you.
But it's never: I'm here for you—right now, what do you need?
It's always: Everybody has ADHD these days.
But it's never: It must have been really hard to learn about your ADHD after all this time of knowing something was wrong but never having answers, how do you feel?
It's always: I hope you feel better soon
But it's never: I know things won't ever get fully better for you, but I still want you to experience joy. Shall we grab a coffee or have a movie night soon, just sit together and chat?
It's always: Why didn't she tell me things had gotten so bad?
But it's never: I hadn't realised she was suffering so much I wish I had checked in more often/sooner.
It's always: Their mum isn't very organised.
But it's never: Their mum is really poorly but she tries her best and the kids are happy and loved.
It's always: You should try microdosing or giving up gluten, my cousin cured her chronic illnesses this way.
But it's never: I've researched your exact condition(s) and I'm sure you've tried lots already but I read [this] may help some people, would you like me to send you the article?
It's always: We just grew apart. I never hear from her since she got sick.
But it's never: What could I have done to keep the friendship alive and make things more accessible for my friend?
It's always: You're just hard work.
But it’s never: I know you work so hard just to show up.
It's always: I know she's sick but she never talks about anything else.
But it’s never: Maybe I'm the first person she's spoken to in months and she needs to offload. I know she would do the same for me….
It's always: We aren't allowed to go to theme parks because my mum has a brain disorder.
But it’s never: Theme parks are really hard for mum, we go to them with dad and with mum we go to places like the beach or the forest where it's calmer, but just as fun.
It's always: She's really let herself go I'd never go out looking like that
But it’s never: She's really unwell and still gets up and outside whenever she can. Fair play.
It's always: I don't know why you won't just try….
But it's never: I know you're trying your level best everyday and I think that's admirable.
It's always: I would invite her but I know she won't come, probably just cancel last minute.
But it's never: I want to make sure I invite her even if she can't make it, and if she can it will be lovely to see her.
It's always: She's a bit much
But it's never: She's been through a lot. I'm really proud of her.
It's always: We have to always work around you. Can't book a table anywhere without knowing what chair you might be sitting on.
But it's never: So glad you're coming! Is there anything you need re accessibility when I make the booking?
It's always: She's pretty boring these days.
But it's never: Despite what shit she has going on she still brings the vibes.
Parenting + chronic illness + disability is a lot. Each of these things on their own pose real challenges and together, along with the trials and tribulations of everyday life—appointment fatigue, school work, relationships and the rest—make it even harder to navigate.
I wrote this not to outsource blame, or add pressure to others. Each person has their own set of life challenges and being there for other people constantly—even when those people are our friends—can potentially lead to burnout. That's not what this is about.
However, I do believe there are ways we can show up differently and be more present for each other.
When we take time to listen or educate ourselves on what another person is going through, it allows us to offer them (and ourselves) more empathy. Also, FYI, sending memes is a love language, apparently it falls under the ‘pebbling’ umbrella and I'm here for it.
It's not about bending over backwards, always putting others first and yourself last, it's about understanding that people have needs that may differ to those of (y)our own and sometimes those needs require accommodations and more accessibility.
Relationships are always a two-way street and with risk of sounding ‘preachy’ communication is key.
Love your people. Send the meme or gif that reminds you of them, a song you'll know they'll love, a text to check in and remind them to drink more water, it's the little things that mean a lot. 💚
Yes! The parenting with chronic illness/disability is just so hard
#2 tho 😖😖😖