forum Ask about Mental and Physical Disabilities

Started July 22, 2018 by @Eirwen

tune

Hello all!
To start off, I have high-functioning Autism, Anxiety, lymphatic and nerve damage, and Crohn's Disease. I have worked with many kids with physical and mental disabilities, my Husband has ADHD, and my Sister-in-Law is missing part of a Chromosome. If you have questions about mental or physical disabilities, and/or the struggles they are likely faced with socially, psychologically, and barriers to physical freedom, feel free to chat with me!
If you have a disability someone is asking about, or have knowledge about a particular disability, feel free to offer advice and info as well!

.

Hi! I'm writing a character with autism. He's a main supporting character and I wanna be sure I've done him justice. Would you be willing to look over my character?

Apologies about the late response - I've been in the process of moving, and in this heat its taken a while!

@Vexillologist I'm so glad you offered to answer questions! (I actually might take you up on that for a character I'm planning)

Crohn's Disease is under the umbrella of Irritable Bowel Disease (IBD) along with Ulcerative Colitis (UC). Many times Irritable Bowel Syndrome (IBS) is lumped in with these, however IBS does not involve inflammation or a physiological basis. Basically Crohn's Disease is chronic inflammation in your GI tract that can occur anywhere along that route (mouth to anus). UC also has chronic inflammation, however it is only in the large intestine (colon), only affects the top layers, and does not affect other areas of the body, only resulting in symptoms such as abdominal pain, loose or bloody stools, fatigue, loss of appetite and potentially anemia. UC rarely if ever require surgery, and can go into remission easier and for longer periods of time.
Crohn's Disease is a more "serious" disease which affects the top layers as well as deeper layers of the GI tract. Mine is located in the Ilium, which is the small section that connects the small and large intestine. It's sort of like a consistent burn that results in scarring if not treated properly. Symptoms include bouncing between diarrhea and constipation, abdominal pain, fevers, rectal bleeding/bloody stools, and serious fatigue (similar to UC but usually more severe). Plus, because that section of the GI tract is inflamed and scarring, little to no nutrients can pass through the intestinal lining, which often results in vitamin deficiencies thus increasing fatigue. This also leads to skin, vision, joint and liver problems. Because of the scarring and inflammation, things like intestine blockages can occur, leading to ulcers, or fistulas which are holes in your digestive tract that causes fluids to leak into your skin or other organs. It can also lead to the fusing of two sections of intestines together. Finally, Crohn's Disease increases risk for colon cancer. I'm also on a very restrictive diet, as many foods will cause an increase in symptoms, it's called the FODMAP diet.
My "level" of severity is relatively average, bordering severe, as I have to be on basically super powered anti-inflammatory medicine taken four times a day, and even after three years have yet to get close to remission. Severe cases or long lasting cases can lead to surgery to cut out a section of intestine, but that doesn't necessarily guarantee remission (because even after surgery the disease doesn't just disappear). When I was first having issues and diagnosed, I could barely do the dishes for 20 minutes, and was in constant pain, especially after eating (as that's when symptoms are most severe), but now I can function moderately, aside from increasing vision issues, memory recall problems and general foggy head, as well as general weakness and fatigue. Basically I could possibly manage a part-time job (right now I'm working maybe 8 hours a week as an editor/office assistant, trying to find a part-time job I could do), and I can be active for around four days straight, but I will crash and hardly be able to do much for a few days to a couple weeks. When I have those "crashes" or have increased symptoms, its called a "flare up". During those times I can barely make myself a meal or take a shower. If you're interested in learning more about the lowered physical and mental capabilities of people with Crohn's/UC/IBD, and many others with immune diseases, check out the "Spoon Theory." It's been an incredibly helpful tool for me to explain what I'm capable of doing.

As to who is likely to get the disease, they have yet to find any definitive links, however the general demographic is people in urban areas and of higher socioeconomic brackets, industrialized countries, norther climates, Caucasians, and people who eat high-fat diets. Most people who are diagnosed are under the age of 30, but can be diagnosed later in life. There seems to be a correlation to genetics, but nothing firmly held. Right now there are no cures, and no definitive causes, however they believe it might be those with an overactive immune system, or have something to do with a certain "chemical" found in a small percentage of dairy cows (I'd have to find that article I read again to give more detail on that).

I hope that wasn't too long an introductory explanation! If you have any other questions feel free to ask! I ain't shy!

@WriteLikeYoureRunningOutOfTime I'd be happy to look your character over! Let me know who it is and I'll check them out!

Thank you! Here he is: Javi Ramirez

@WriteLikeYoureRunningOutOfTime

I took a look at Javi, and it all looks really good! From what I read, the only suggestions I would make are about a couple things in his mannerisms, flaws, and talents:

Mannerisms: The fidgeting is a typical Autistic trait, especially chewing nails and skin around the nails - the fidgeting is a way to ground themselves by using their sense of touch very specifically. However, the shivering when he's afraid is something that isn't usually done by most Autistic people. Normally (and especially if they're incredibly anxious or having sensory issues) they will rock back and forth or, more rarely, side to side, and find a quiet corner with as little sensory influences as possible. It's a self soothing technique you might want to consider, unless there is another reason for the shivering. I'd also consider taking away the "twitchy" mannerism, replacing it with something along the lines of being very specific about things - a lot of Autistic people are very specific about how/when someone can touch them (I saw you touched on this in Flaws), and where their things are, and who can touch or move their things.

Flaws: I would consider touching a bit more (unless you've already thought about this and just don't have it written) on what you mean by "meltdown" if someone touches him without asking. What does that look like? Also, is that the major sensory issue he has? Often times a lot of people/talking, loud noises, unfamiliar places, and being asked to do things differently than their used to can cause anxiety for Autistic people as well.

Talents: (Again, unless you've thought about this already,) I'd also expand on his viciousness/strength - while this can be true of many Autistic people, you'll usually only see their anger or their strength when triggered by some sensory issue, or if they feel that they are being hugely misunderstood or their needs aren't being met. Of course, this varies from person to person, but what specifically brings out his viciousness? Is it Autism related, or Chaser/environment/job/survival related?

Otherwise, in all honesty, you've done an incredibly wonderful job at capturing an Autistic person's traits without alienating him and keeping him relate-able. As a fellow Autistic - thank you for representing the "disability" so well!

Thank you so much! I'm so glad you like him. Javi's my favorite character right now and I just didn't want to rely on hurtful stereotypes. Your input is highly appreciated and extremely helpful :D

Fibrodysplasia ossificans progressiva(or Stone man syndrome) is it a tumor? Cancer? Or just tissue disease?

Hi I just have some questions about mental disabilities

Sorry @@miccoc for not seeing your question, I don't know what's happened to @Eirwen . From what I have found, FOP disease is neither of these things; it's caused when bones don't stop growing due to a random gene mutation - the disorder appears in childhood or adolesence. Average life expectancy is only up to 40 years of age. FOP is often mistaken to be tumours as the disease is so rare.

Sources (that will also give additional information about the disease):

• Rare Disease Review - Stone Man Syndrome: Turning into a living statue
• Muscular Dystrophy UK - Fibrodysplasia Ossificans Progressiva

Let me know if there's anything else you need to or want to know!

---

@HE.HAS.GREAT.EARS.WATCH.OUT, what questions do you have? I'm in the GMT time zone so I may not be able to help answer them until tomorrow, assuming you live in North America like the majority of users here.

I was wondering how to know if I have anxiety or depression

Warning: I am not a psychologist nor am I qualified to diagnose people. Refrain from self diagnosing. See your local counsellor (if you are a student) or a health practitioner.
If you ever feel like life is not worth living, contact your local and/or national depression or counselling hotline immediately.

---

It's possible to have both depression and anxiety at the same time, though this may require further specialised treatment. Mental disorders are often co morbid (occurring at he same time).
I've arranged information about these disorders; see if they fit in with what you've been experiencing. Beware though: Symptoms may be caused by another psychological or physical disorder, so don't put all your eggs in one basket until you get a qualified evaluation and diagnosis. Please read the sources I have included at the bottom of the post, I am only giving an initial outline of what the disorders are like. The sources have additional and thorough information, and include depression and anxiety tests.

---

Anxiety
Disorder may be diagnosed if one feels anxious or panicky most of the time for at least a few weeks.

Symptoms include:

• Feeling worried or uneasy most of the time
• Being extra alert
• Not being able to concentrate
• Feeling on edge or not being able to relax
• Needing frequent reassurance from other people
• A pounding heartbeat, even in a calm situation
• Feeling faint

---

There are disorders similar to General Anxiety Disorder, of which anxiety may be a symptom of:

• Panic disorder (Recurring panic attacks)
• Phobias (E.g. Cynophobia, agoraphobia, claustrophobia)
• Obsessive Compulsive Disorder (OCD)
• Post traumatic stress disorder (PTSD)

---

Depression
Depending on the type, disorder may be diagnosed if one experiences symptoms for at least 2 weeks to several months. Depression differs from a low mood, as the latter will lift after a few days or after changes like getting more sleep or exercise.

Symptoms include:

• Not getting any enjoyment out of life, including not getting any joy from activities you normally like
• Feeling hopeless
• Feeling tired or lacking energy
• Not being able to concentrate on everyday things like reading or watching TV
• Having thoughts about suicide or wanting to self harm

Life changes can help with coping with depression and make you feel more in control, like keeping up a healthy diet, regular exercise and plenty of sleep.

There are many different types and causes of depression, including:

• Trauma (Depression may be co morbid with PTSD)
• Grief, such as the loss of a loved one
• Seasonal Affective Disorder (Known as SAD, type of depression that comes and goes in a seasonal pattern)

---

Sources (NHS UK):

• Low mood and depression
• Clinical Depression
• Do I have an anxiety disorder?
• Understanding anxiety and panic

Hi!

I was curious how to write a BPD (Borderline Personality Disorder) sufferer. He is my main character and I feel like before I write anything massive for him, I’d like to get a good standing on how it’s like to be one.

Thank you!

Hi Emi, I'll do my best to help you! I don't know what your story idea is like, so I'll be giving a bit of general advice. Apologies that this took a while to write, I'm slow when writing.

---

On writing people with mental illnesses

---

Firstly, don't rely on just my post, research into any unknown topic you want to write about is of critical importance. Find forums on BPD, ask people with the disorder questions, especially if you know anyone with BPD locally. This will help gain an understanding of the mental illness and what it involves. Disabled people often experience challenges or are unable to share the story, so it is important to note that what abled (or otherly disabled) write can and does affect perceptions of the particular disorder in wider society (For instance, fiction often portrays schizophrenia as having a split personality, but the actual disorder has nothing to do with this).

• Talk about the person, not the illness. People are defined by things like their expertise in an area, their hobbies, their relationships etc. It is very rare for someone with a mental disability to consider themselves defined by it (This does happen sometimes with physical disabilities, for different reasons, but that's another a subject).
• Mental illness does not automatically make a person violent or a serial killer. Mentally disabled people are actually more likely to be victims of injury or murder than abled people.
• Pop culture perceptions of psychiatry, especially "asylums" are outdated.
• Don't roleplay as this character. It is very difficult and often considered disrespectful to rp as someone with any mental illness if one does not have experience with the disorder.
• Don't use quick cure tropes. They present some things as instant cures and don't take into account that people may live a long time with their disorder. Especially the idea that a character will 'shed' their 'broken mentally ill self' and become healthy once they find love.
• DO NOT use the character for inspiration. You have said that he is your main character, but you should be careful if any other main characters or side characters join him because they're glad they're not him, they use his illness as motivation to reach goals or 'put life into perspective' because they're glad they're not him, they want to cure him etc.

---

Some other reading for writing characters with mental illnesses:

• Writershq - Seven Tips For Writing About Mental Health
• Writersdigest - How to Treat Mentally Ill Characters When Writing a Novel
• StandOut Books - What to Consider When Writing Mental Illness (Also check the comments for additional info) (This website has other helpful information for writing people of different demographics, and general writing)
• Quora - How can I write a character with a mental illness?
• SparkPress - How to help debunk the stigma around mental illness with your story
• LadyGeekGirl at Wordpress - In Brightest Day: Mental Hospitals and Abuse in Pop Culture

I have posted a lot of sources here, but this is a very complex and sensitive issue that is often misinterpreted.

---

On Borderline Personality Disorder
BPD is one of the most common types of personality disorders. People with this disorder generally have disturbed ways of thinking, impulsive behaviour, and problems controlling their emotions. They may have intense but unstable relationships and worry about people abandoning them.
Like other personality disorders, BPD appears in adolescence or early adulthood, though personality disorders cannot be officially diagnosed until the person is at or over the age of 18.

However, like with all mental disorders, symptoms differ in frequency and severity among those with BPD. They can be divided into four areas:

• Emotional instability (Known as affective dysregulation)
• Disturbed patterns of thinking or perception (Known as cognitive distortions)
• Impulsive behaviour
• Intense but unstable relationships with others

There's no single cause of BPD, but it is usually a combination of genetic and environmental reasons. Things that place someone at increased risk of the disorder include:

• Genes you inherit from your parents may make you more vulnerable to developing BPD. However, there is no single gene that causes the disorder.
• It's thought that many people with BPD have problems with the way their brain chemicals (particularly serotonin) are transmitted in their brain.
• Brain scans have shown that people with BPD have different brain development. There are three areas of the brain that are smaller than usual or with unusual levels of activity: The amygdala (important for regulating emotions, especially fear, anger, anxiety), hippocampus (helps regulate behaviour and self control), and orbitofrontal cortex (involved in planning and decision making).
• Environmental causes include: Being a victim of abuse, being exposed to constant distress as a child, growing up with neglectful parent(s)

---

Source (NHS UK):

• Borderline Personality Disorder

---

Let me know if there's anything else you need to or want to know!

Thank you very very much! This is very useful for me (and yes, he does have supporting characters around him, so no need to worry)! I have done research before on the Disorder, I was just curious if I got the bud of it.

In short, thank you, this cleared up a lot of my lingering concerns.

NP! Be sure to read the sources I linked, and I hope all goes well!

To any new people reading this thread, I won't be answering anymore questions for the time being as it takes ages to write answers and it is late here in the UK.

Thanks

one of my characters has, anorexia, depression, anxiety, self harm, how can I show that she cofortable and actually happy in some way being like this?

@Peridot Thank you for answering questions! I've been dealing with my own illness, moving, and a few other things, which is why I disappeared for so long, but I am back! Of course, please do feel free to answer any questions, I just started this thread for the open conversation and advice, from any and all!

@Llewellyn (If you're still looking for suggestions…) In my opinion, any answer to your question really depends on what symptoms they display, and the psychological or physiological reason everything occurs.
For example, self-harm may be a 'side effect' of the Depression and Anxiety; a way of them focusing their anxiety on a physical stimulus to help them cope with anxiety attacks, or a way of reminding themselves they can still feel, or possibly the only way they feel they can feel anything at all, or as a form of self punishment.
As for anorexia, it depends on how they are anorexic; Are they purposefully purging via vomiting or laxatives? Are they excessive exercisers? Do they just limit their calorie intake, or only eat certain foods? Why do they engage in this behavior? Do they feel that their eating may be disgusting to others or even to themselves, do they need to be skinny to feel desirable or have fears of being 'fat', etc.?
Depression and Anxiety have many different symptoms as well, ranging from internal thoughts and worries, to debilitating anxiety attacks and inability to do anything or feel anything.
To be able to find ways to show they are happy/comfortable, it really depends on the reasons and symptoms of their illnesses.

Since I'm back, I'll do my best to keep an eye on this thread once again, so feel free to ask any other questions, or start up a conversation! And as I said, if anyone has any other answers/things to add, feel free. I am by no means a professional (I have a BA, but am not licensed at all!), so other opinions/suggestions/facts would be awesome!