#spoonie support

Do you push through or stay home and deal with the guilt?

There is an unfortunate truth many spoonies (myself included) have to face - that developing a chronic illness or disability can come with a loss of independence.

Suddenly, we need help in ways we haven't since childhood. Doing chores, going out, getting dressed, getting food. The list can go on.

And when we compare it to the traditional view of adulthood - this loss of independence and new needs can make us feel ashamed.

Feel like a burden or a problem for having these needs.

But why do we feel like a burden? After all, when children ask for help, we don't shame them. When our friends ask for advice, or a hand we don't reject them or laugh.

We don't treat them like a burden for having needs.

We help. We offer kindness, a listening ear, our thoughts, experiences, and time.

So why are we so hard on ourselves as spoonies?

We so often cut ourselves down, make ourselves smaller. We often try hard to pretend we don't have needs - while still giving space for non-spoonies and their needs.

I think in truth it comes from how society views us as spoonies. There are so many hidden messages that we are an extra burden, we need "extra support."

Like our needs are something to be added on top of everyone else. That they are an addition that would otherwise not exist, rather than just accepting them as needs, just the same as non-spoonies.

Which can really get into your head (I know).

But should it?

We deserve to be here, just as much as anyone else.

We deserve to take up space, have needs, hobbies, fun. Just because we are disabled doesn't mean that we are worthless.

Our needs aren't unreasonable - they are just different. Everyone has needs. Ours might be more visible, or less "typical" - but it doesn't make them wrong.

Let yourself take up space - in whatever way you need. Ask for that help, do those hobbies. You are allowed to have needs, and it is OK to ask for help to do things.

As hard as it can be (and again, after developing CRPS, I am learning just how tough it can be), give yourself grace. Let yourself have those little moments where you can. It is ok, it really is.

After all, we all deserve our time in the sun - spoonie or not - and we have every right to take it. We are no more a burden than anyone else. We are just here - and that is enough.

 I have been dealing with nonstop, intense financial stress  for the last two years, essentially since getting my ASD diagnosis and losing my job (yes the two are connected, but I can’t do anything about it). I’ve gone into a complete regression of skills and haven’t been able to do any sort of work for at least a year.

Unfortunately, being on the NDIS doesn’t do shit. My rent has gone up again, and my parents already paying for more than half of it because I can’t afford it being just on government benefits. Which means that my mum can’t retire, even though she’s dealing with multiple chronic illnesses.

This is all basically just to say, if anyone knows of just even small basic things that I can do to try to earn some money it would be really appreciated to know. One thing that frustrates me so much is that I can’t draw for the life of me, But I can write. But unfortunately, because of how fucked up and nonsensical copyright laws are, people can make money off of art commissions of fandom, but writers can’t make commissions on fan work.

I’ve already tried selling a bunch of things, some with success, but at the moment my functioning is so low that anything that requires more than a few steps (i.e. taking photos of the item, writing up a description of the item, researching what is the best price to sell it for, posting it, replying to messages, etc.) is just too much for me.

-your mobility aids are not ruining you aesthetic

-your conditions do not make you a burden

-you are allowed to be angry

- you are allowed to grieve

- you are alllowed to seek joy

-you are allowed to make your life easier

-Your assistive devices are not weird or ugly they help you live and experience the world

-You are lovable

-you are valued

-Struggling or having flare ups is not a failure

- You dont need to explain yourself to anyone

- Your succeses are amazing even if they dont happen in the typical form or on a certain timeline

- You are allowed to take up space

- You dont have to be productive or inspiring 

My account @valeriesvoice was banned from TikTok two nights ago citing “multiple community guidelines violations” when I have had none. This is a continual pattern with TikTok and disabled creators, and I’m heartbroken that I’ve lost the platform and community of 61,000+ folks where I felt I could talk candidly about my illnesses and experiences. 

If you wouldn't mind taking a minute to email TikTok using this template to help me get my account back, I would really appreciate it!!

You can also fill out a form here: https://www.tiktok.com/legal/report/feedback or report in the app.