If you have a disease, a disability or an illness, what is the biggest thing you want people to know about writing characters like this?

[Leyelle]

For me it's probably that I live in a weird state of dichotomy. I want to feel beautiful as much as anybody else. I don't feel beautiful when my skin is turning gray, I don't want to settle for staying this way and work to recover again (because it flip-flops from month to month) especially when it reaches to my face or makes my hair start falling out, but I also don't want to cover it up.

For one thing, having anything on my skin when it's doing poorly is uncomfortable at best, but I also don't want to pretend that this isn't the case. I want to be loved even when I have days where I look kind of scary and I don't want to try to "trick" anyone into believing that I'm "fine."

I'd also like to point out that I'm okay with people asking "what happened to your arm, leg, face, etc" as long as it's in a legitimately kind or concerned way. I know it looks kind of frightening at times, so it's completely okay to ask.

I'd like to see more characters with skin issues and differences represented in stories. I'd like them to get to be the leads sometimes, but just characters period. So often I feel like people limit the sort of characters they'll write to what they think will sell. Unless the characters are villains, they often don't want to give the characters traits most people won't consider pretty. This is why I write characters with things like scars and vitiligo (my FL in "Damsel in the Red Dress" has some pretty prominent scars.) We want to see ourselves in stories as something other than the bad guys.

Edit: I have eczema btw. It was pretty bad when I was a little kid and covered me from head to toe in what looked like gray scales. It comes and goes now, sometimes worse than others.

[SumireHime]

I have the endocrine disorder that you and I were just talking about in another thread. For me, I want people to do their research. I was just talking to someone else about how they can better research for writing a character who is deaf. Trying to give good advice because as a hard of hearing person I want them to write it well, but people will do what they want to do. It's hard to find books with characters who are written realistically and isn't trauma p*rn. We have good days full of laughter, too. It isn't all rain clouds and tragedy. We have rainbows even if it's still raining or painful. It can also be hard for someone no affected to perceive how many times we see our doctors. Or how many medications we might take, and how strict that is. How we might get worse even if we take medications, that they aren't suddenly magic. The struggles it can be to find good help, be that from a doctor believing you and believing in you, to even a good caretaker if we need one, or a good medical aid like a cane that's correct for us. So many details that are hard to cover if you're not in it. I just want healthy depictions of us.

[Leyelle]

I was just talking to someone else about how they can better research for writing a character who is deaf. Trying to give good advice because as a hard of hearing person I want them to write it well, but people will do what they want to do.

I agree. it's so important that people do their best to represent what people are going through accurately, and there are so many degrees to it. People who don't have depression might not realize that as you mentioned, people with depression still experience happy moments sometimes, or enjoy being around their loved ones. How nuanced trauma can be no matter how much you love people and so on.

[kyupol]

I have autism and other trauma related mental issues. I just want as much accuracy as possible. Don't necessarily need to justify or sympathize.

[MiharuWrites]

Not sure what's it like in other countries, but in the US women are often not taken seriously by doctors. Case in point, I am a woman from the US with some kind of autoimmune issue(s). I have had a long list of symptoms plaguing me since about 12ish and I'm in my twenties. I still have no answers. I have done multiple blood panels that say I'm healthy. I've been referred to other doctors who declared me healthy. I have been ignored outright or told my symptoms are simply stress-related and will go away when my semester ends (this one was recently). Over a decade I have struggled with issues that make no sense for someone my age such as joint pain (all the joints), constant tiredness, sudden bouts of horrid abominable pain that literally make me so weak I have no balance or pass out, and more.

The doctors don't magically figure it out the first, second, or tenth time. There are doctors, male and female, who will ignore you or insinuate you're making it up. My normal is not your normal because I'm so used to pains kicking in randomly every day. I've had nurses ask me my pain level and give me looks when I answered I was fine at the moment but pains could always start in five minutes to change that. My normal is not your normal because I'm always tired. I have good days but I am never well rested. My normal is not your normal because what I have wasn't easily diagnosed and assigned a medication to fix it. I'm still looking for answers. Everyone has a different experience with healthcare and mine comes with constant frustrations. As an added bonus because I'm poor I can't see the better doctors who may know what's wrong in a year if I just save up or ever probably. I can't afford to go nearly as much as I probably should and a lot of us have that problem.

That's what I want people to know. It's an ongoing battle. Doctors aren't always on your side. You are not guaranteed quality care that will show you what's wrong.

[allisoncandraw]

I have Tourette's. Every time it's portrayed in media, it comes in the form of a character spewing out curse words. Thats not what Tourette's is. It CAN be a symptom for some, but it's extremely rare.

A Tourette's diagnosis is dependent on whether someone has both motor and vocal tics. Curse words have nothing to do with a diagnosis. I wish more people would show characters with facial twitches or making humming noises. Tics like these are much more common than what is usually portrayed in media.

[Leyelle]

Humming noises? I've definitely never heard that mentioned at all that I can remember

[allisoncandraw]

Yep just an example of a vocal tic, but there are all kinds. Mine usually come as a humming sound

[Leyelle]

When you come back later and realize you forgot to share what you'd like to see in more stories lol. I had to edit the OP

[SumireHime]

You know what, I've never thought about including someone with skin issues. I'll write that into "Lyra's Magnum Opus". I have a character who's backstory hasn't been explained yet. She comes from a tropical part of Japan, so I can see how having eczema would be problematic for her and cause anxiety since her skin would be exposed daily. Thank you for the suggestion!

[Leyelle]

You know what, I've never thought about including someone with skin issues.

Yeah, it's something pretty rare in stories I find. And that sounds like it could definitely be a pretty interesting thing to include in your character. I live in the islands myself, and it's not just the exposed skin, but also the heat makes it physically awful. Eczematic skin cracks easily and gets itchy and burns at so many triggers, including extreme heat and sweat.

[SumireHime]

Oh this is good to know. Is there anything else that causes flares commonly? I've taken care of babies who have it, but don't know much besides that first hand.

[Leyelle]

Diet wise, a lot of sugar often makes it worse. I have to be really careful to balance my diet with a lot of probiotics, and probiotic pills don't really work, only fermented foods.

My skin is also pretty sensitive to fabrics that don't let my skin breath (polyester and such) but that's largely because of the heat, also plants and pollen can be and irritant, salt water and chlorine, and things like animal fur. (which is a shame, because I love animals.) The kinds of soap I use too, because anything drying makes it worse. As well as shea butter and lanolin, which just seem to make eczema worse. (I can use shea in my hair, but not on the parts of my body that are affected)

[beebutterbee]

I have schizoaffective disorder and PTSD but I think the same illnesses can present itself in so many different ways depending on the person. I guess just reading work and media from people who have that lived experience will widen a person’s perspective on these mental illnesses so that they can better represent it in fiction.

I think fiction tends to focus too much on visual hallucinations with schizophrenia and its related disorders and doesn’t really show any of the other more heavy facets of it. I’d just recommend reading nonfiction about it first to get a better understanding for anyone wanting to write characters with schizophrenia or adjacent mental illnesses like schizoaffective or schizotypical disorder.

[skidiggy]

I have several chronic conditions, and I'd want people reading and writing about them to know that your mileage may vary on frequency, intensity, and duration of symptoms, and it doesn't make them any more/less valid than someone else's experiences with the same illness/condition. Everyone is different, and if you write from a place of authenticity with your own experiences, maybe it can help someone else understand your specific circumstances better.

[Leyelle]

I’d just recommend reading nonfiction

yeah, this is probably a good practice for all kinds of illnesses. documentaries, interviews, biographies etc

What is a schizoaffective disorder? I only know of schizophrenia, not any others

and it doesn't make them any more/less valid

I feel this, because I've personally struggled to decide whether I have the "Right" to refer to myself as someone with an illness, or who has suffered from an eating disorder and so on, because other people seem to have suffered worse things than I have. But it's still valid whatever your experience. Working on my new story "Rigamarole" is probably the first time in my life I've given myself permission to acknowledge my teenage struggles with my eating disorder for what they were instead of weirdly invalidating them.

[NickRowler]

I wish with depression (and for many other disabilities as well) that the narrative isn't focused on curing someone of their condition. With chronic illness, sometimes how it affects you might fluctuate overtime. So there might be times when you feel "better" but other times when you don't. It's important to be supportive of people instead of trying to morph them into something they aren't.

[Leyelle]

As someone with depression, my perspective is that you shouldn't be trying to make anyone into someone they aren't, like you said, but I like reading and writing the stories that show people supporting others through their (willing) journey toward recovery. Not somebody trying to force someone else to change, but loving them as they choose that they want to try to recover.

[beebutterbee]

this is probably a good practice for all kinds of illnesses. documentaries, interviews, biographies etc

A agree, it’s helpful to hear from the voices of the people who go through these experiences we might not have to get a better understanding.

And schizoaffective is basically schizophrenia when a mood disorder is also present, like in my case it’s also Bipolar I. And I agree with @NickRowler and @Leyelle I don’t think there really is a cure for most mental illnesses, and recovery is good but it’s more like managing symptoms that will always be with that person. Like there is no “cure” for schizophrenia and even on medication I still have symptoms but I’m learning to live with it better than I had before. And sometimes people are treatment resistant to medication to not fault of their own, and I don’t think they should be shamed for not being able to manage as well as others. Mental illness and illnesses in general are just really specific from person to person so I think everyone has a different take on it, but it’s important to respect how other people deal with their symptoms.

Sorry for writing a novel I hope I didn’t write too much I got carried away

[MK_Wizard]

I've often suspected that I am on the lower spectrum of autism and a nurse kind of confirmed it. What I want people to know most of all about people like me... is that we're just people

You don't need to put us in very special episodes, treat us any different and our lives are not governed by our autism. It is also not a reflection on our intelligence. What is true is that we tend to hyper focus on something until it is done, we sometimes have trouble looking at someone in the eye and there is no one size fits all. Autistic people have a different range of quirks, but they are not what you think and chances are, you met an autistic person and didn't know it. And like I said, it's a spectrum and not everyone is on the high side.

Also, when it comes to autistic kids, you have to be patient with them and sensitive. 90% of what they do isn't because they are naughty. They think different and see the world different. However, this doesn't mean they are slow. They're not. Autism means, you think different and your brain is wired different. That's all.

So in short, it's ok for you to subtly hint that a character might be autistic, but please, don't make the source of pity, the stereotype or an invalid. Most importantly, don't make them weird just because they're autistic. My brain may be a little different, but my heart and interests are just like yours. Most importantly, we have feelings and we are aware of when they're not being considered. Don't portray us in a way you wouldn't want to be just because of your differences.