Fnd - Tumblr Posts

So you have chronic pain?

Yep

So are you in pain now?

Yep

So were you in pain yesterday?

Yes

And the day before?

Yes

And the day-

Okay let’s go over the definition of chronic again

You don’t have to be on the brink of collapse to use your mobility aids.

You don’t need to be limping to use your cane. You don’t need to be staggering to use your crutches. You don’t need to be falling over to use your rollater. You don’t need to be too weak to stand to use your wheelchair.

They’re there to help you and you are never too “strong” to be using something that helps you.

Health is a myth and you cannot convince me otherwise

People think they’re trying to be kind when they say “it’ll get better” but they aren’t.

It’s a punch to the gut whenever someone tells me “it’ll get better” because I’m chronically ill and it won’t. All you’ve done is try to make yourself feel better about my lifelong suffering.

It’s been said before and I’ll say it again: the amount of disabled rep in the media is pathetic

A lot of my seeing disabled people in the media used to be immediately followed with “yeah this is stereotypical but at least there’s a reminder that we exist”.

Fuck that. Disabled people are treated like shit in the media and you never see them (except amputees but they have fully functioning limbs that just look robotic rather than actual prosthetics). Just because they give us representation doesn’t mean we should be grateful for the overused tropes, the inaccuracy and the general ableism.

Be angry. We have the goddamn right.

Having severe anxiety and chronic illness is constantly trying to figure out if you’re spiralling or this is actually not normal for most people but you feel like shit 24/7 so you’ve just been ignoring for the past four years

Where's my morning crew whose disability/ies kept them up all night?

I love you!

ok so you support the disabled, disordered, and mentally ill. but are you normal when someone takes long to respond to you? or if they have a hard time listening to you? when someone has a hard time giving you their attention? or when their manners aren’t perfect? or when someone makes mistakes that may be obvious or simple to you? or when someone talks loudly or “causes a scene?” are you normal when people have to think really hard to explain things? or when they have a hard time putting their thoughts into words?

are you normal when people’s hair is unkempt or oily or visibly unbrushed? or when their face might be full of acne? or when they don’t have deodorant on for one reason or another? how about if their clothes are dirty? 

are you normal about disabled/disordered/mentally ill people when they make you a little uncomfortable?

Having a chronic illness makes you need a rest from resting

infuriated by the language in the "welcome" letter we got from the local FND Service in Devon (fnd = functional neurological disorder) which perpetuates a myth about FND

emotional/psychological stress is a risk factor for developing FND - which means you're at a higher risk of developing FND if you're experiencing or have experienced those states (for example if you're a childhood trauma survivor) - it is not a cause

FND is a condition with physical symptoms and a currently not understood cause, in which the brain and body can't talk to each other properly (leading to loss of function or sensation, and brain fog and memory issues, for example, and a type of non-epileptic seizure too)

it's diagnosed both by ruling out other stuff (like MS, which it can resemble) and also rule-in tests these days - depending on which country you're in and how much funding it gets to be explored

for some of the latest info on FND and brain differences etc please read this pdf from Nature Reviews

and once again this is not a psychogenic condition - it's a physical condition whose causes are not yet understood

Shoutout to people with Functional Neurological Disorder

Shoutout to people with functional tics

Shoutout to people who have dystonia

Shoutout to people with Psychogenic non-epileptic seizures

Shoutout to people with paralysis and or weakness

Shoutout to people with tremors

Shoutout to people who shut down/unresponsive episodes

Shoutout to people who have walking difficulties

Shoutout to people who have numbness

Shoutout to people who have speech problems

Shoutout to people with vision problems

Shoutout to people with hearing problems

Shoutout to people with memory loss

Shoutout to everyone with FND

Hi guys! Here’s some advice from a cane user on how to spot a fake cane user/disability faker!

YOU CANT

You can not spot a “fake disabled” cane user. You can not know if someone’s “really disabled”, much less by just looking at them. Here are some common misconceptions.

“Cane users always need their canes. If they walk without it or put it away when it’s inconvenient, they’re faking”: WRONG! Many cane users are what we call “ambulatory” cane users. This means they don’t always need their canes to walk. I’m an ambulatory cane user, and I experience really horrible leg pain on the daily. However, I don’t always use my cane, and when I don’t need to walk or stand a lot in a certain place I don’t use it. And when I do use it, I may lift it off the ground or carry it in places that are sandy, gravelly, or otherwise hinder my cane.

“Cane users walk abnormally without their canes, someone who walks normally without their cane is faking”: WRONG! Many ambulatory cane users can walk in a way that seems “normal”. This doesn’t mean they’re not in pain, or not “really disabled”. This just means that their condition doesn’t cause a noticeable difference in walking, and likely manifests in a different way.

“Cane users always need their cane, someone who doesn’t use their cane at home is faking”: WRONG! Cane users may not use their canes at home, because at home they may be able to do things like sit down wherever and whenever, regain more spoons, and use other mobility aids. Additionally, some ambulatory cane users only need or use their canes when they are doing something physically taxing, like going on a hike or standing in a long line.

“My cane user friend told me this person looks like they’re faking, so it must be true”: WRONG! Being a cane user doesn’t immediately make you an expert on all different conditions and experiences. Your friend does not know the random cane user walking down the street, they are going off looks and stereotypes. Disabled people are not immune to being ableist.

“They enjoy their cane too much/they’re too happy/they decorate their cane, so they can’t actually be in enough pain to need a cane” WRONG! We’re people like everyone else, and we experience positive emotions too, even if we go through a lot of pain. To me, customizing my cane is like getting a tattoo or putting streaks in my hair, it’s a way of self expression. And we deserve to be able to talk openly about our full experience, which include the parts we’re neutral or happy about.

“They’re one of those cringey teenagers who name themselves arson and like dsmp, so they’re probably faking” WRONG! Do I even have to explain why saying someone isn’t disabled because of their name and interests is messed up and also stupid? Or did you already know that and just wanted to make fun of a disabled teenager?

“They’re too young to be using a cane, so they must be faking” WRONG! there are lots of disabilities or injuries that can cause young people to need a mobility aid. For example, I use a cane for my fibromyalgia.

“They only use it in private places, and never in places where people recognize them, so they must be faking” WRONG! In a world where anyone can just randomly take out their phone, take a picture of a cane user, and post them online to be made fun of, it can be stressful to use a cane in public areas. Also, they may not want people to ask questions, or they may feel embarrassed about it.

“I saw them switch hands, so they must be faking” WRONG! There are different reasons a cane used might do this, but I’m going to use my experience as an example. My fibromyalgia is not consistent. Sometimes one leg hurts more then the other. But as I said, fibromyalgia is inconsistent, and sometimes my other leg will start to hurt more or need more support, which is when I switch hands. And when both my legs hurt equally, I may switch my hand if it’s getting too sore.

“They told me they feel like they’re faking when they use their cane, doesn’t that mean they don’t really need it?” WRONG! Imposter syndrome is strong in a lot of disabled people, especially when for a lot of our lives we were told by doctors that we were fine and just being dramatic. Anxiety is also comorbid with a lot of physically disabilities, which only strengthens this. To add to this, something that I’ve felt and seen other disabled people talk about it, when their disability aid lessens the pain, they start thinking “well I’m not in that much pain so I don’t really need it” even though the reason they’re not in that much pain is because of the aid. I know it seems dumb, but imposter syndrome can be that strong and affects disabled people a lot.

“They don’t have a diagnosis, so they must be faking” WRONG! First of all, diagnoses are expensive. On their own they’re often already expensive, but counting the tons of tests you have to take to confirm the diagnosis? Absolutely ludicrous. Some may also choose not to get a diagnosis, so that they don’t have to deal with the prejudice and setbacks of being diagnosed. Also, some people use a cane for injuries, and for stress or fatigue related pains.

These are only a few of the things I commonly hear from fakeclaimers, and I wanted to just put out a reminder that fakeclaiming hurts the disabled community much, much more than it does ableists. Next time you see someone with a cane switch hands, or someone with a wheelchair stand up, or someone with crutches put them down, before you immediately call them out to a friend, take a picture, or write a post: does your fakeclaim rely on stereotypes? Are your reasons things that apply to ambulatory aid users?

If so, just stop. Be mindful. Please.

Had a chat with my therapist (who has a chronic illness) and she let me know that half the things I was talking about were apparently not normal or FND related things.

So guess who might have POTS…

Going to a disability shop tomorrow to get some compression gloves, ring splints and other stuff!!! Very excited XD

I think the reason why people want to know what's "wrong" with disabled people is because they want to reassure themselves.

They want you to say you were in a horrific accident or that you have a well known and treatable disease because they think they can stop it happening to them.

They think their health is a given because they aren't a dangerous driver/ an alcoholic/a drug user/obese/an unhealthy eater etc. Obviously this isn't true but it's easier for them to think of it like that.

Until one day they meet someone who did nothing. They're not really asking "what's wrong with you". They're asking "what went wrong" because they think they can avoid it.

So when they meet someone who made all the right choices, who was healthy, who was safe and one day woke up sick and never got better, it scares them because some part of them realises that it could happen to them.

They can exercise and eat a balanced diet and be as careful as possible and it doesn't do a thing and they can't do a thing about it. That terrifies able bodied people.

People like to look for something or someone to blame and they hate it when there's nothing there.

I went outside for the first time in over a month!

I've missed the outdoors so much. Everything is so beautiful. I actually had to close my eyes and breathe in multiple times because it's so overwhelmingly gorgeous out there.

There was water and ducks and trees and dogs and sun and insects and plants and wind and clouds and sky!

I've missed it all so much and I know it'll probably be another month before I get out again so I'm trying to savour the memory right now.

I went outside for the first time in over a month!

lol ok this explains so much about the kind of freak that you are

I'm the kind of freak who's housebound and so sick that they can't leave the same four walls and see the sky and breathe fresh air for weeks at a time! Hope this helps 😊

Using crutches is so funny to me because ideally you would be walking around on all fours but society isn’t built like that

For anyone who needs to hear it: homeschooling is a good option.

I was vehemently against starting homeschooling for so long when I was first ill because I just wanted to be like everyone else and do things like everyone else.

Eventually I became so ill that I had to join a medical needs teaching programme and they started teaching me at home a few days a week.

I got a few weeks into it and realised I was the best thing ever. I couldn't cope being in a school but one to one lessons adjusted to my needs meant I could start getting one hundred percent attendance most weeks for the first time in two and a half years.

It helped so much with my struggles around school as an audhd person as well!

My contact with my friends didn't change. I actually started seeing them more because I wasn't wasting my spoons by trying to fit in!

Obviously it won't work for everyone but it's not as scary as it can seem and it's always worth looking into things that can help you.