Ella Ruby

Moving slowly in the right direction. After over 8 years of illness, I finally have the main puzzle piece of EDS, ASD, gastroparesis and so much more! My mobility isn't great, I need full time care, I use a wheelchair but I am also still me. I love my tattoos, piercings and bright hair! I recently pushed out and have a mohawk. Tired of being clinically extremely vulnerable but it's life. I have a wonderful partner who loves me and a cat who adores me! My life is a struggle but I have support and friends! It's a journey and always will be! Soon to be fitted with a suprapubic catheter
Community Voices
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Food for thought

So I've finally gotten a good gp, they listen and they believe CMT could be a real possibility. I also have EDS and my mobility is really effected. I use a wheelchair outside and a stick inside, now going to a crutch. I just want to know if it's CMT. I have so many symptoms and they are getting worse while many scratch their heads. I've been told by a neurologist is not MS but your reflexes are bad, drop foot, weakness, feeling like water is trickling down my legs and hands, pain and cramps and tremors. I love art but my hands are getting worse. I just needed to vent really. I hope they work it out but I know at 26 my life mobility wise isn't getting better and won't, whether it's CMT & EDS or just EDS... #EDS #CharcotMarieToothDisease #CMT #MOBILITYISSUE #Wheelchair #WheelchairUser #tired

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I always forget to...

<p>I always forget to...</p>
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Are you a bath or a shower person?

<p>Are you a bath or a shower person?</p>
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Not Dealing With My Feelings Today! 😢 #CheckInWithMe

I feel so sad today, my anxiety is making it even worse. It’s like I can’t breathe properly, there is a pressure on my chest. My stomach is churning and knotted. I’m so tense my shoulders and back hurt.
I hate that the fact that members of my family have contributed to me feeling this way. That their actions have had such a negative impact on me and I have done nothing wrong! All I did was share that I’ve been given a diagnosis of ASD. I’ve been snubbed and ignored for they way I was born! I’m frustrated and dissapointed with their response. I just don’t understand why they are responding in a such a negative way. I just don’t get it.

I finally have answers to why I struggle. I have reasons as to why I have struggled with sensory issues, emotional outbursts, constantly misinterpreting what people are saying, the list is endless... I felt such a relief having this diagnosis, it made sense to me. Now I’m made to feel like this is a negative thing because of my siblings reactions. Once again I feel like an outsider in my own family! Feeling like this sucks!
#Anxiety #Depression #Autism #CheckInWithMe

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Anyone else hear the word “autistic” being used as a slur?

In school I hear people call each other an “aut” or “autistic” . They use it the same way the (r word) is used. It shouldn’t bug me, but as a true autistic person, it hurts me a lot. #Autism #DisabilitySlur #Ableism #NotOK #Aspergers

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Kalina Jones

My Autism Went Undiagnosed Because I'm a Woman

When I thought of autism, I always thought of a little boy crying on the floor. Of a nonverbal child. Or maybe one of those heartwarming stories where a mall Santa gets down on the ground for an autistic kid who couldn’t sit in his lap because of a meltdown. I thought of discussions of autism epidemics, possible causes, and hopeful “cures.” Of Sheldon Cooper, or the awkward nerdy guy in the college lounge whom everyone said had Asperger’s. And isn’t that what we think of when we think of autism? It was traditionally believed that four times more boys than girls are autistic, but researchers are starting to question the legitimacy of those numbers. They’re realizing that autism often looks different in women and girls than it does in boys, and that many mental health professionals have no idea what to look for because almost all research has exclusively focused on the male version. Because girls don’t look as expected, they were often seen as the anxious or overly-conscientious kids. When I finally showed up in the offices of professionals in my early 20s, I was diagnosed with generalized anxiety disorder, adjustment disorder with depression, OCD and social phobia. They told me I had so many things, but never that I was autistic. It was a spark of recognition at age 30 that led me to realize such a thing was even a possibility. Of all the things I’d thought of when I thought of autism, I’d never thought of someone like me. I had gotten autism totally wrong, and I realized almost everyone around me had too. We had bought into this idea of a modern epidemic to cure, never considering that being autistic might simply mean a different way of processing the world. That maybe being autistic wasn’t inherently worse than being non-autistic, only different. I see being autistic as a way of being and thinking that affects your social and emotional world, a kind of sensitivity. Some of us are more sensitive to sounds, to emotions, to lights. We are more wrapped up in our inner world than in the worlds of others. And we stim, or use different kinds of movement to express anxiety or happiness. We tend to see things a little more concretely, which is why I sometimes get hung up on taking language literally. But it’s also why I’m awesome at precise academic-style writing. In fact, researchers say autistic people tend to be great at systematizing and pattern recognition. We might struggle with executive function, which can make us seem a little disorganized and cause us to have trouble just “doing the thing” — though we’ll paradoxically be super anxious for weeks about the thing that would have taken two minutes to do. And then there are some common neurological quirks like trouble with facial recognition, spatial reasoning, and short-term memory recall. Things I felt really weird about for years before I realized they fit the spectrum. But still, living as autistic in a non-autistic world can be rough because the world isn’t designed for the strengths of autistic people. So we “mask,” what researchers call hiding autistic traits to better fit in. Girls are thought to be significantly better at masking than boys, another reason we blend in so well. The downside is that masking may bring some emotional trauma with it, since it’s essentially the act of spending significant effort hiding what comes naturally. Carefully monitoring my facial expression to ensure I looked comfortable to any critical outside observers? Frequently holding back emotions until I got to a bathroom or my car to begin sobbing? Pretending I understood jokes everyone laughed at? These were things I knew about. Knowing I’m autistic doesn’t change me; I’ve always been this way. But finding an autistic identity has shown me that I’m OK the way that I am. That kind of acceptance allows me to look for lifestyles and work and academic routes that are suited to me and make use of my strengths. And autism comes with plenty of strengths. I’m passionate, strong-willed, obsessed with detail and great at memorization. Knowing I’m autistic allows me to feel good about that, instead of wondering why I couldn’t just live the life everyone expected of me. Too many people think autism needs to be cured and defeated, when in reality, autistic people just need acceptance. It’s simple, but it requires moving beyond our stereotypes and caricatures and questioning the things we thought to be true. It requires the humility to listen closely to see if you have more to learn before stubbornly questioning someone who comes out to you as autistic. It requires more people like me saying I’m autistic so that someone like you might realize maybe you could be too. The bottom line? Being autistic is no tragedy. But not knowing you’re autistic and living in a world intent on judgment and exclusion very well may be.