#disabled talk

[zebulontheplanet]

If you’re on disability TikTok (literally I hope you’re doing ok if you are LOL) then you probably know the drama that is happening on it.

Lemme just say this, there will ALWAYS be someone that is more disabled than you. And that isn’t a bad thing to say. I have mutuals who are full time power wheelchair users. I have mutuals who are high support needs. I have mutuals that are more disabled than me and I acknowledge that because there are people who are severely disabled and more disabled than me and that is OK!!!

Acknowledging that there are severely disabled people and that there are people with more severe disabilities than you isn’t a bad thing. It is life. No one is “At the same level of disability”. Some people are just more disabled and thats ok to say.

I’m a wheelchair and forearm crutch user almost full time. I can acknowledge that my friend with cerebral palsy whos a full time wheelchair user and eye-gaze AAC user is more disabled than me. I can acknowledge that my disabilities are more severe than most of my classmates. I can acknowledge those things and it’s all correct!

No one is at the same level of disability. There are people that are more disabled and thats ok and a conversation that needs to be had. Because the second we start trying to put everyone on the same level, the more people that will die from lack of care and access.

[c0rvidbones]

how in fuck do i stop myself from this bs impostor syndrome of "You're not disabled enough for a wheelchair" "everyone is gonna judge you" like i cant get out of this mental rut. and sometimes i even tell myself im just exaggerating myself but then i get up and nearly faint or fuckin feel like every nerve in my legs are On Fire. and im like hm thats probably not normal but i should get going anyways. or the fuckin winter comes and suddenly my legs just flat out refuse to move/bend without incredible stabbing pain. and uet. surely im just being dramatic. SURELY im overstating myself. how do i stop this brain hell.

[zebulontheplanet]

People don’t realize just the sheer mental toll it has on you to see abled and allistic people doing things that you can’t do.

Oh nice, you have a new job? I haven’t worked for years due to my disability and maybe never will.

Oh nice, you’re moving into a new apartment independently? Sounds fun, I probably never will be able to live on my own.

The utter strain all of this puts on someone’s mental health is HARD. Being higher support needs isn’t all sunshine and rainbows folks. It isn’t fun to not be independent, to rely on others just to fucking do simple things. It’s hard, it hurts. It isn’t fun to have every aspect of your life controlled by others. It isn’t fun to be doing things that your 14 year old sister has already excelled at. It isn’t fun.

I will never ever understand people who think that being higher support needs is easy and all rainbows because we usually don’t work and “get everything handed to us” like please. Just listen to us once and awhile.

[zebulontheplanet]

You’re still chronically ill if you have a good day. You’re still valid. Your chronic illness is still valid if you have one good day out of a hundred bad days.

[zebulontheplanet]

As someone with hypermobility that causes a lot of pain, I’m glad (but not glad because fuck global warming) that this winter has been warmer. Usually the cold takes me out of commission and I become basically home bound in the very cold months and lose a LOT of mobility. With it being in the high 40s and low 50s I have a lot more mobility than I’m used to for this time of year.

I have a lot of problems with the weather. In the summer my POTs (officially unofficially diagnosed) gets a lot worse and I experience a lot of presyncope and even syncope sometimes. While in the winter my hypermobility gets worse because I get more stiff and causes me a LOT of pain.

[zebulontheplanet]

Hi, can I ask what hypermobility is? Sorry to be a nuisance if you don't want to answer, but I've never heard of it before!

Hey anon! Of course, you’re no trouble at all.

Hypermobility is very very common. Most people know it as simply being double jointed, being able to do party tricks or having parts of their body bend more than the average person.

It’s completely normal for most people! However, for some people it causes pain, and that’s when it’s not normal.

Hypermobility for me means that my joints move in directions they aren’t supposed to, they shift and get subluxations also known as partial dislocations. This causes extreme widespread pain. I hurt from my head to my toes everyday all day. We are pretty sure I have this because I have a connective tissue disorder. We aren’t currently sure which one, but I am in the process of being tested and I’m working with a geneticist.

For me, my Hypermobility disables me greatly. I am a part time forearm crutch user and I am probably going to get a wheelchair for Christmas (yay me!).

I hope this answers your question and if you have anymore questions then let me know! Have a lovely day!

[zebulontheplanet]

If I don’t get a wheelchair soon then I swear to god I’m gonna lose it. I’m tired of being in unnecessary pain.