JustMe

@renaissancebard
I’ve been told you’d have to meet me to believe me. I have apparently struggled with a little known disorder called Functional Neurological Disorder) most of my life. The bottom line is that my brain controls my body more than the usual person. You get butterflies at the idea of stepping on stage, my ankle swells and I can’t walk on it. While it taxes my body, it also feeds a creative spirit. I crochet, knit, weave, spin, embroider, sew, make jewelry, paper craft, woodwork, paint, stamp, create mosaics, really if you name it, I’ve probably dabbled. I write and read voraciously, I binge watch DC shows and mourn the loss of Firefly and Bones. I like to look beyond, to see past the everyday, to look for the extraordinary.

Things People With Disabilities Are Tired of Hearing

It can be incredibly easy to say things we don’t mean. Words can be hurtful, especially when the things spoken directly attack aspects of our identity we can’t change. Whether or not it’s intended, abled individuals often say things to those of us with disabilities that is incredibly harmful. After hearing certain things said for extended periods, these phrases can also add insult to injury, wearing disabled persons down emotionally. Similar things said to partners or caretakers of a disabled person can also be incredibly hurtful. There are also a variety of different disabilities — physical, mental, chronic illness — so depending, you may hear different but just as ableist phrases. We asked The Mighty’s disability community what things they’re tired of hearing because you’re not the only one hearing these things. If you are disabled and had these hurtful things said to you, please know that you are seen and deserve to be treated with respect. And for all your able-bodied people out there, take note of this list of phrases you’ll want to avoid when speaking to your disabled friends, family, and coworkers. Here’s what our community shared: 1. ‘ You would never know you had a disability.’ This can be especially hurtful, simply for the identity-based aspect. Disabled people have to live with their identity being tied to things that they would often love to be able to do but can’t due to the nature of their physical or mental differences to that of abled people. 2. ‘ What’s wrong with them?’ This question is incredibly insensitive, but often one that individuals ask of caretakers, parents, or to the partner of a disabled person. A person’s disability is none of your business; it is an aspect of their identity that should be cherished should they choose to share that aspect of themselves with you. 3. ‘ Anything is possible if you try hard enough.’ Not everything is possible for a person with a disability (or many people, honestly). There may be triggers that must be conscientiously avoided if the individual struggles with post-traumatic stress disorder (PTSD). There may be inaccessible areas that a person in a wheelchair cannot access. The unfortunate reality is not everything is possible because not everything is accessible. 4. ‘Maybe if you moved more you wouldn’t hurt so much.’ As mentioned before, movement isn’t always achievable with certain disabilities. Exercise and weight loss are two aspects often touted by individuals who often don’t understand what’s at stake for individuals who have disabilities to put their bodies through physical exercise without assistance or the watchful eye of a physical therapist. 5. ‘ It can’t be that bad, knock it off.’ As someone with a chronic illness that is incredibly painful to live with, I have two things for you. Yes, it definitely CAN be that bad, and I would love nothing more than to be able to just blow off my pain levels. 6. ‘ Everyone gets tired.’ Everyone DOES get tired, but the levels and experiences of mind-numbing fatigue that disabled people have on a daily basis are vastly different than how an abled person undergoes tiredness or exhaustion. Another factor that plays into fatigue is that certain levels of pain severely impact sleep patterns, which can subsequently impact brain function, emotional stability and more. 7. ‘ I wish I could bring my dog everywhere.’ Service animals of any nature are working animals. While service animals are treated while off the clock as family pets, they are creatures who operate with considerable care of the person who relies on them. An abled person’s dog is NOT the same thing as a service animal. 8. ‘ You’re too young to be hard of hearing.’ More people than you realize are hard of hearing or deaf, and it’s not because they just listened to a lot of loud music when they were younger. According to the National Institute on Deafness and Other Communication Disorders (NIDCD), one in eight people in the United States is hard of hearing in both ears. While the rate increases in older adults, people of any age can be hard of hearing or deaf. 9. ‘ You are an inspiration.’ While this phrase is often meant to be encouragement, disabled individuals just want to be able to live their lives while not being an example to or for anyone. While many individuals’ stories are unique (and that’s why platforms like The Mighty are so important), it is a private journey that some may not be forthcoming to share. That’s perfectly understandable and their right. 10. ‘ Let me pray you get healed.’ Another often well-meant phrase, unless you are already familiar with an individual’s religious persuasion it’s best to avoid telling someone you’re pray for their “healing.” The healing of a disability in some cases is simply not possible, so this can be incredibly harmful for many different reasons. What phrases are you tired of hearing? Let us know in the comments!

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Why don’t they care?

This requires some background. I was diagnosed with FND (Functional Neurological Disorder) in 2017. For those not in the know, that means that the emotional portion of my brain (specifically the amygdala) has a very strong pathway connected to my involuntary functions, brain stem, speech and processing centers, and motor reflexes. My NeuroPsych thinks I was actually born with FND (usually develops due to trauma, often complex trauma in young individuals), meaning I’ve never been “normal”. But we didn’t figure any of this out until I was 33. Until I’d been taking 22 pills every morning for a host of diagnoses I didn’t actually have and the symptoms of which weren’t getting better. Doctors accused me of lying, family got upset, all of which stressed me out causing, you guessed it, more symptoms. We figured it out though, so everything should be fixed since we know what to treat right? Uh huh. Show me a life without any stress and I’ll ask what time the funeral is. I’m getting things together(ish), I’ve accepted that disability is just where I’m at. I have generalized anxiety disorder, social anxiety, and complex PTSD, great additions to FND. My dad at the time is dating who would become ex-wife number three.

Dad loves me in his way, but untreated bipolar paired with Narcissistic Personality Disorder (NPD) doesn’t create the safest or stablest of environments. Their marriage imploded, because she was unstable. Anyone who attacks someone like a monkey clinging to their back and then threatens their daughter to try and force them to do what she says; unstable by my definition. Out of a year of marriage, they were together 3 months. I’ve always been a daddy’s girl, even once I saw what was happening, how damaging our relationship could be to me. So I supported him through it all. That was three years ago. She walked back into his life this spring and apparently I’m supposed to just forget it all. Pretend she’s a completely different person, forget that she put him in the ER, forget the abusive phone calls and voice messages she left on my phone to try and get at him, forget that she threatened my life if he didn’t do what she said.

I put a boundary in place. One year. If she’s truly changed, then she’ll still be that same person a year from now, and I’ll feel safe with proof. One year with no fits, no attacks, no suicide threats or arrests, and no asking for money. That’s what the first marriage felt like, her gold digging. If she loves him, then she loves him for him and doesn’t need his money. Except he’s suddenly constantly broke. A man who has a steady monthly income that’s half what I live on in an entire year, is strained for cash. Then he starts pushing. “She says hi.” No. I said no contact. “Can’t you just say hi over the phone?” No. I said no contact. “You’re going to lose your relationship with me. I hope you understand the consequences of your actions.” This is the consequence of her actions. She threatened me, attacked you, made me feel unsafe. Now to feel comfortable, I need proof of her growth. That is a consequence of her actions. “You’re shifting the blame, you need to take responsibility.”

That was when I pointed out that a big part of this year is because I need to protect myself. I’m overweight, making me 5x more likely than the average person to have a heart attack. I have an irregular heartbeat, making my heart more likely to have a health event. I have FND, making me 10x more likely to have a stress induced heart attack. I have severe anxiety and complex PTSD, meaning I jump and react 100x more than the average person to stress (these numbers are from my doctors). I HAVE to protect myself. I had three major seizures last Friday night because of a disagreement with him over this very topic. When I reminded him in that conversation that it would harm his relationship more if I fell over dead of a stress induced heart attack because I didn’t put that boundary in place, he thanked me for reminding him that I have a serious neurological condition because it’s easy to forget. I walk around with a stress noose around my neck every day and it’s easy to forget?! Today when I told him about the seizures, after he pushed me to talk to her, I was told that I was making a big deal out of nothing.

Nothing. My health is nothing to him.

This is where my topic title comes in. Why doesn’t he care?! I’m a former step-mom to a kiddo who turns 16 this fall. I’d sacrifice myself for my kid in an instant (and almost did one 4th of July when his dad messed with fireworks). His mom granted me mom status after I left his dad because I “did more than his dad ever did for him”. How do I understand what a parent should be when mine doesn’t care in the slightest? I’m not saying he can’t have a relationship, I want him to be happy. I didn’t even say he couldn’t have this relationship, I only asked that my boundaries be respected. Why doesn’t he care?
#FunctionalNeurologicalDisorder #CPTSD #AbuseSurvivors #ComplexPosttraumaticStressDisorder #Anxiety #SocialAnxiety #frustration

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- I warn u , I will break Ur heart
- Already broken .

Lately , I was wondering a lot about the meaning of happiness. Is it a case that the patient feel his soul as light as a feather then return to his dark life again? Or is it a real face and hidden face of life ? I think that it is the first one , people usually try to get out of their misery by distracting themselves away from it by persuading themselves that they are “happy” , but I know the truth , happiness is a legend that never existed , Ik it , I always feel dull from inside that’s the shape of humanity.
#Anxiety #Depression #BorderlinePersonalityDisorder

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