pandaspansawareness

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the thing about disability is it really does sometimes boil down to "wow i wish i could do that" and then you can't. and it sucks.

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10 years on from my Autism diagnosis

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My Chronic Illness Journey (ME-like symptoms, Lyme testing, LDN & Hope)

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Disabled Rage

We talk a lot about female rage which is great (rage that stems from a lifetime of being faced with misogyny), but we should also be talking about disabled rage (rage that stems from a lifetime of ableism, being misunderstood, and unable to get the appropriate care.)... For years I have struggled with a constant internal sense of anger that has destroyed my mental health and has caused issues with adrenaline surges and a fear of seeking healthcare. Here are some examples:

Tourette's specialists refusing to believe those of us with Tourettes when we say suppression harms us, and trying to silence people with the condition as they believe that they know more about TS than the people who actually have it.

POTS specialists acting like forcing yourself to walk more and exercise will cure you when POTS often co-occurs with ME/CFS and similar issues that cause post-exertional malaise meaning that being pressured to walk more and exercise can use what little cellular energy you have left to the point where your body cannot regulate the autonomic nervous system at all and it all just gets worse. Since using a wheelchair and exercising less my POTS has been less horrific to deal with but so many "POTS coaches" and doctors refuse to listen.

The "OCD cycle" making me feel like a failure for being unable to stop my rituals because I literally thought that my thoughts could cause the end of the world and that the aliens in the afterlife would be angry at me. I felt so guilty for not being able to stop this "OCD cycle" that I purposefully didn't get treatment for an ankle infection that had grown almost 10 times its size and had gone all purple because it made me believe I deserved the pain.

The medical system denying the existence of Chronic Lyme despite over 700 peer-reviewed scientific articles and studies showing Lyme and co-infections can persist despite antibiotics and therefore be chronic. If you believe in antibiotic resistance and post-infectious inflammation there is zero reason not to believe in chronic Lyme. Due to this denial, we are forced to spend thousands on private healthcare as even the NHS won't treat us. I would be de@d without long-term antimicrobials.

Autism "specialists" who know hardly anything about Autism and refuse to listen to Autistic people.

Natural and alternative interventions being seen as "quackery" even when they are evidence based when they are essential for those of us who react badly to medications or can't afford medications. I wouldn't be alive without some alternative interventions, and yes they are evidence based with scientific studies backing up their usage.

Hospitals being inaccessible with no room for wheelchairs in the waiting room, extremely high reception desks where they can't see a wheelchair user over them, toilets with the red call string tied up where disabled people ironically can't reach it...

Constant medical gaslighting, having doctors dismiss and belittle serious issues and deny referrals to the point you either have to spend thousands of pounds on private healthcare to save yourself or self-diagnose to save yourself as you have no other option and have people ridicule you and say "sElF DIAgnoSis IsN't VaLID" as if it's a choice - it is traumatic to have no option but to diagnose yourself because the medical system is in shambles and won't help you. Diagnosing myself in the past when doctors wouldn't listen not only reduced some of the trauma caused by doctors, and saved my life. It is a privilege to be able to get a formal diagnosis.

Not being able to exist online as a disabled person without being fake-claimed or harassed by strangers...

This is just the tip of the iceberg. I don't know if myself or others like me will ever find peace.

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When I was 12 one of the popular girls at school asked me what I did over the weekend and I said "Netflix and Chill" because I heard other people saying it and wanted to fit in. I took it literally and thought it meant "Watch netflix and relax." I didn't know why ppl were laughing until I learnt what it really meant.

Anyway - I'm Autistic.

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The weirdest thing about UK healthcare is that gender identity clinics were deemed "a dangerous risk to the mental health of the youth" and yet camhs is still allowed to exist.

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From My Book “Musings On A Margin” Available Now On Amazon

https://www.amazon.com/Musings-Margin-Chronic-Illness-Neurodiversity/dp/B0C7J9D22S/ref=sr_1_1?crid=3OR0RQ1PSEH4D&keywords=musings+on+a+margin&qid=1687140459&sprefix=musings+on+a+margin%2Caps%2C163&sr=8-1

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Why An Early Autism Diagnosis Is Vital 

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A Poem To Those Who Don’t Accept My Tics

People say it’s a disorder

Like something in me’s out of order,

They want to banish it out of me,

But why can’t they just try to see? 

They see it like the spawn of satan, 

Is the one making me twitch, 

But what we really need to straighten,

Is the fact that it’s not just a glitch. 

This ‘glitch’ you speak of helps me,

Why can’t I just tic free?

Why can’t we just accept this unique form of diversity? 

They want me to be ‘fixed’,

As if loving me and having tics can’t be mixed,

They want me to be ‘normal’,

As if I constantly have to be formal,

But can you imagine,

How boring that would be?

You may not know the strength it took,

To accept myself as I am, 

But you look at me like I'm some sort of crook, 

Who just couldn’t give a damn. 

I refuse to make you comfortable,

In your ableism,

I’m ungovernable.

You must love me as I am, 

If you truly love me like you say. 

Do you love me as I am,

Or just as you want me to be? 

I want to be free, 

Not from my ‘disorder’, 

But free to be me,

You were out of order.

Why won’t you just accept me as I am?

Why do I have to change for you? 

Why can I not just be loved with my condition? 

I refuse to be ‘cured’

Just to be seen as ‘acceptable’. 

You likely don’t know what I've endured,

The judgement is what’s unacceptable. 

The problem wasn’t me. 

By Romy. W

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Even so called 'mild' cases of PANS/BGE can be extremely distressing.

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Functional tics (such as those from Functional Neurological Disorder) are just as valid as organic tics (such as those from Tourette Syndrome). 

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Tics VS Tourettic OCD

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This is an appreciation post for my tourettics with coprolalia.

You are NOT a stereotype, you are NOT a bad person for it, your vocal tics are NOT bad representation, I promise, you cannot control it.

You are amazing.

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Never automatically assume someone's concerns are an 'OCD thought' or 'anxiety thought'. People with mental illnesses are sometimes gaslit into not trusting themselves, this can put someone in danger if they are treated like every concern they have is 'irrational'.

If someone tells you that they know their concern isn't an intrusive thought, and that they have proof that the concern may be true, take them seriously. It can be traumatic if major issues are left unaddressed.