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 2024-05-15 20:47:43 UTC #21

no problem, it doesn't matter how long it takes you to express yourself

I didn't actually say this though haha. I really don't know, and I've not experienced most mental illnesses, so I can't judge, but I choose to believe complete recovery can be possible for some, even if not all. I prefer to believe there is a light at the end of the tunnel, even if nobody has found it yet or might not for hundreds of years. For now, we can all try our bests to live the lives we were meant to live, even if our illnesses will never be cured in our lifetime.

Just my view point of course, but I want to believe in the best even if I've yet to see it.

@beebutterbee now i've gone and written a novel, so we're even lol

beebutterbee 2024-05-15 20:58:34 UTC #22

@Leyelle I guess with me it isn’t actually helpful to say or hope for full recovery, but I’m sure other people share your sentiment. But really severe chronic mental illness never fully goes away so to say, so I think for the people suffering it’s actually more helpful to think about what we can do here and now, and that is usually management.

And that’s not to say we can live our dreams still! It just comes with a struggle. And that’s okay. I mean there’s even two famous women artists with schizophrenia, Agnes Martin and Yayoi Kusama who struggled with it their whole life with their illnesses but created amazing work.

Leyelle 2024-05-15 21:02:27 UTC #23

Well we all have different ways of dealing with things or perspectives on them. I think that whether you believe it can go away or not, the most important thing is that we do our best not to let the things that make life difficult for us keep us from living the lives we were meant to live. So I agree, they don't keep us from being able to live our dreams, and it IS also important to not be trying to live in the future, even when you have hope that full recovery can exist. What's most important is trying to do our best in living each day

I don't know who deems a mental illness severe or not severe, so I can't put a ranking on them

beebutterbee 2024-05-15 21:26:30 UTC #24

Ah I think medical doctors and psychiatrists grade illness by severity according to the frequency and duration of the symptoms, as well as taking into consideration how much the patient tells them those symptoms affect their day to day functioning. You and I can’t grade other people’s illness but the people who experience the, probably know what severity they are at, like I have severe schizoaffective disorder because when I have an episode it debilitates me. And I go back and forth between being able to manage and not manage.

It would be nice for a cure I guess, but then I don’t think my writing would be the same if I hadn’t been born this way. Our struggles often define our work. Even those artists I mentioned would not have made their works if it wasn’t for their struggle that prompted them to find ways to cope. I’m gonna be controversial and say I don’t hope for a cure for mental illness because I rather have a way to just deal with my symptoms better, than be someone else.

I know you mean well but finding a cure for mental illness is rooted it some not great things. It’s usually ableist. But I do wish I wasn’t suffering so much but I think that can be done through coping rather than curing. I mean there’s even a group of people who want to cure autism in “Autism Speaks” and that’s actually super hurtful to a lot of people with autism. Most autistic and neurodivergent people hate that group, including myself.

And now I’ve really gone and wrote a novel but I’m not telling this to be mean because I know you are coming from a good place, but it’s just a little mislead so I’d like to explain my thinking more. Hope it doesn’t come off as rude because that’s not my intention, I actually enjoy talking with you! You bring up very interesting conversations.

Leyelle 2024-05-15 21:35:50 UTC #25

It's totally okay to explain your POV. That's what open discussion is for. I have depression myself, as I said, and I don't consider it ableist to hope for a cure for it, but everyone will have their own opinion. I appreciate the things I've learned, but I believe I could live a better life without it. I certainly can't speak to the way anyone else views the world. All I want is for everyone to be able to live their absolute best lives, whatever that means for each individual.

And I'm not mad, I enjoy talking to you too XD.

KevinReijnders 2024-05-15 22:40:12 UTC #26

Depression is different in that sense though, as it is sort of curable. At the very least it's something that tends to be of a temporary nature.

Leyelle 2024-05-15 22:47:51 UTC #27

I choose to believe that it is or can be curable, but how temporary it is varies. It could be temporary (though I don't think I've ever heard of it before) or it could last someone's entire lifespan. That doesn't mean it's not curable, but it doesn't inherently just end either. I've had it off and on for nearly a decade, and so have some of my loved ones, if they haven't had it longer. I'm not sure what you can count as temporary in the long run but...

HostileFren 2024-05-15 23:22:44 UTC #28

Honestly this is such a great thread, there isn't much representation for characters who also have diseases, diasbilities or illnesses

I also have eczema. For me, it was worse as a child as well, but I was lucky that it primarily only affected my hands and wrists. There would be times that my hands would be literally cracked and bleeding throughout elementary school. Fortunately, it has seemed to mostly go away as I've gotten older, but mine seemed to be worse primarily with the cold, it just seemed to dry out my irritated skin even more. I still get the occasional flare-ups but it is much more manageable now.

I think this really depends on how you are viewing the depressive episodes. If you see them as all interlinked and recurring, then you wouldn't see it as temporary. But if you see the episodes as something that comes and goes, a person may consider them temporary.
There are specific types of depression that are only during specific times for example:
SAD- seasonal affective disorder that primarily causes depression during fall and winter
Postpartum depression- which would occur after birth
For these people, the specific type of depression may be temporary. However as far as I know, people who struggle with mental health often continue to have recurring struggles throughout their lifetime

I really love the insight of this thread though, because as a nursing student, we were taught the medical effects without really delving into how the person feels who lives with the day to day of these conditions

Leyelle 2024-05-15 23:30:59 UTC #29

Same. I usually got it on the back of my knees and in the crooks of my elbows. Nowadays it usually appears on my chest and face. But it covered my body when I was between like 6 and 9. I remember going on a play date with my face just cracked and bleeding, and being asked if I wasn't ashamed for people to see me like that

I agree, these are the only instances when I remember people mentioning it going away, but I was associating the depression linked to a specific situation as separate (though no less hard for the people who experience it.)

TinaAnderson 2024-05-15 23:34:01 UTC #30

That being intersex isn't an illness or condition - nor are we all "hermaphrodites" <-- a word that needs to die in a fire BTW.

Leyelle 2024-05-15 23:36:18 UTC #31

I admit, I don't know what you mean by intersex. Would you explain?

TinaAnderson 2024-05-15 23:46:17 UTC #32

Intersex folks are born with ambiguous genitals or 'atypical' chromosomes, gonads, or hormones. For some reason the first thing many writers (and the public at large) think of is a person having a vagina and a penis - and they come to this conclusion because doctors love throwing around the word 'disorder' when describing intersex folks and we're not disordered simply because we're different.

We're also not walking around with all kinds of junk, either.

Leyelle 2024-05-15 23:49:49 UTC #33

Thank you for explaining That's another one of many many things I know I don't know a lot about. But I've never attempted to write an intersex character before either.

HostileFren 2024-05-15 23:55:44 UTC #34

I couldn't imagine having it on my face. I get the occasional dry patches on my face, but nothing like my eczema on my hands. And it's so much harder to truly moisturize your face in comparison to something like your hands. I used to have to lather up a bunch of eczema lotion and wrap my hands at night to allow them to heal some.

I totally get what you mean, I was just adding them in as I noticed your response to KevinReijnders so I figured I'd add in some examples of temporary depression to add to his response

Leyelle 2024-05-15 23:58:20 UTC #35

yeah there's no problem XD, all povs are welcome.

Oh yeah. it was pretty rough. It makes you have to grow into a tough person haha. I felt like a monster when I was a little kid, and it's part of the reason I'm so passionate about people being able to see themselves in fiction

HostileFren 2024-05-16 00:00:19 UTC #36

This is a great explanation on a topic that most people, myself included don't know much about so your explanation is much appreciated. I knew the basics, but you definitely explained this better than I could've even hoped to

HostileFren 2024-05-16 00:02:53 UTC #37

I totally get this. I can't even remember how many times I had to assure my classmates that I was indeed not at all contagious and they wouldn't get it just from being around me

Leyelle 2024-05-16 01:35:46 UTC #38

ahh, fortunately I didn't have to do this. I was homeschooled

NickRowler 2024-05-16 02:22:21 UTC #39

(post withdrawn by author, will be automatically deleted in 24 hours unless flagged)

EncryptedWriting 2024-05-16 02:50:02 UTC #40

Oh lordy this is my jam (unfortunately LOL). Let's start with physical ones:

Polycystic Ovarian Syndrome (PCOS): Funfact, 1 in every 10 women have PCOS. What does it entail for me? It differs. I am infertile due to the illness, I don't have menstrual cycles and have struggled greatly with my weight. Despite medications, nothing has helped me without agonizing periods happening.
For someone with PCOS, I hate when people sympathize with me saying how I'm lucky I don't have to worry about getting pregnant (yes it's happened before). Truth be told I don't mind the menstrual cycle zip, but I don't like when people pity me. For people with PCOS it affects everyone differently. Some people have very long, intense periods. Some have weight loss. Some of haritism (hair growth). And some have dark spots and acne (I do have acne).

AUDHD: breaking this into two which is ADHD and autism. I was not diagnosed with either until 22 despite a parent being diagnosed with autism. Since having a diagnosis, I realize how different my life presented from others. ADHD is hard to describe, but I put it like this,

"Your mind if a computer and you open a browser. However, you keep thinking of different topics and have to open new pages. Thing is, you can't delete the old ones. So suddenly your mind has so many open browsers that your "program" starts to shut down/lag."

With ADHD and autism, I have an EXTREME noise sensitivity. I am one of the people who will be wearing noise canceling headphones or noise canceling earbuds. Often people don't understand this sensitivity and say "Oh everyone has some noise issues", and it's put off as just another sensitivity issue. But this noise sensitivity ruins my life. It becomes a battle EVERY DAY if I don't have something to take away the noise. Often certain noises make me SO angry that I physical hurt myself. Sniffling, tapping, coughing, and chewing are my worst four. Sniffling is #1 by a long shot.

It used to be so bad that even since elementary school, I wished I could be partly deaf so I wouldn't have to hear the noises. That's how severe it is. I don't think this anymore, but that's also because new methods have come out to block this noise.

Also, textures. So other sensitivities for me include: food textures, clothing/cloth textures, and issues with feet touching things.

Certain foods I genuinely can not eat. My body will refuse it and I will be sick for a day. These foods differ, but the main ones are: soft apples, jell-o, soft watermelon, and anything mushy. Mashed potato's are okay. For someone like me, you will see me often avoiding food and sticking with safe foods. I will also ask if a food has a certain texture if I'm interested but unsure.

Another senestivity is touch. There are certain textures of clothing/cloth/etc that if I touch it, I will throw up. It's hard to explain why but my body thinks it is so vile thay it cannot stand it.

The last thing I will talk about is burn out. Women with ADHD are at a an increased risk of burn out. But this isn't the feeling "Oh I'm tired", I lose all energy. My body can't move and I slur my words. My world spins and my eyes start blacking out. I become dizzy and stumbled back to where I seek comfort either in my car or bed. I cannot simple just eat food to feel better. Often if I'm in this mode, I will take a nap. But it's not a nap, these last anywhere from 3-6 hours. And I don't feel refreshed, I feel bad to normal.

Also, being overstimulated is a factor. If I'm out too long in public, I will get overstimulated, ancy, and then lead to burn out.

If you have any questions let me know. I can answer anything about PCOS, adhd, and autism.