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Writing Resources: Chronic Pain and Illness

Sp's resources for Content Creators Materialist

Trigger warnings for discussion of chronic pain and illness. Other authors are more than welcome to add their own points and I will update the link in the masterlist as more is added. Alternatively, send me an anon ask or DM if you want to remain anonymous. I have more than one chronic issue myself, I will use the block unbutton if you're an ass about this.

Chronic pain and illness have little to no representation in fanfiction. If you wish to add these to your story and you don't experience the subject yourself, please do research using medically accurate sources.

Patient Care and Health Information - The Mayo Clinic. Look up the condition in the search bar.

The NHS website Look up the condition in the search bar.

Another good resource is forums and subreddits.

2. Even people with the same condition have different experiences, be careful not to make blanket statements.

3. Women, POC and members of the lgbtqia+ community are less likely to get treatment, more likely to be treated like drug seekers and are more likely to be misdiagnosed or have to wait much longer for an accurate diagnosis. Similarly, their issues are more likely to be blamed on mental health issues and hypochondria.

4. Someone living with a chronic condition may not have a 'normal', or what they consider normal may be disordered. Some people with chronic conditions may not know what not being in pain or being well-rested is like. When I was younger and before my current treatment, I was never hungry or out of pain, this shocked people when I told them, it was as normal as breathing to me.

5. Doctors can suck, some people are outright terrified to get treatment due to past experiences. I was treated like a drug seeker once and now get the shakes before seeing a new doctor for fear of being called an addict.

6. The things people experiences do not care what you have going on. They can steal happy moments in a flash and render someone unable to leave their home, it's common for someone with a chronic condition to need to plan everything down to the second (or feel like they need to), cancel at the last minute or worry that they won't be able to enjoy something they have looked forward to.

7. We are not looking to be babied, I know my own limits and will express them. There is a line between a character being caring and infantilising. Having said that, there are times when I haven't expressed my needs for fear they will be ignored. If you are writing a caretaker scene or character be careful to ensure the other person still maintains their autonomy.

8. Empathy, not sympathy. Sympathy is looking down at someone in a hole and telling them they can climb out, empathy is getting in there are helping them out. Sometimes the best thing someone can hear is "I have no idea what you're going through."

9. Chronic conditions are systematic, it's not just pain, it's also brain fog, being unable to sleep or stay awake, having problems controlling emotions, and changes in appetite and sex drive.

10. There is never a magic cure, chronic conditions are a part of someone. Making them disappear doesn't mean a happy ending because, in real life, they don't disappear. It doesn't make someone less than others if they don't get better.

Part Two: Chronic migraines

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Writing Resources: Chronic Migraines

Sp's resources for Content Creators Materialist

This is a long post!

Trigger warnings for discussion of chronic migraines. Other authors are more than welcome to add their own points and I will update the link in the masterlist as more is added. Alternatively, send me an anon ask or DM if you want to remain anonymous. I live with this condition every day and it has a serious impact on my life, don't be an ass.

This is a follow to this post I am over the moon at how many people are using/sharing it. Thank you so much!!

Basic facts

If you take anything away from this post, please make it this, migraines are not just really bad headaches. Migraines describe a wide range of neurological issues.

Remission happens, but it is a pipe dream for most people and many people who go into remission end up getting them again. This means that there is no cure, only treatment. Partial remission (less than ten migraines a month) is far more common and is what most people aim for.

Three out of four people who have migraines are AFAB, as the last post states being AFAB makes it much harder to access treatment.

Migraines are a registered disability and cost people/counties millions of dollars a year in treatment.

Miragines run in families but that doesn't mean they can't come from other sources.

There may be no clear cause.

Some people have spots on their brains that show up in MRIs others do not. Not having spots doesn't mean you are lying.

Some migraines mimic strokes.

For some people, nothing works, they have tried everything below and get no relief.

The Migraine

It starts with the prodrome this is the attack phase. Some people get an aura which might mean vision changes or smelling things that aren't there. Some people (myself included) don't get auras this does not mean we are lying.

The attack phase, this is when the pain starts. See symptoms for more information.

Postdrome, this is what happens after. Some people become very hungry, some people get huge bursts of energy, and some people are so tired they can't get out of bed.

Symptoms

Head pain, but not always, silent migraines and/or stomach migraines exist. The pain can be crushing/squeezing, pounding, sharp, burning, stabbing or a mix. Pain is often not isolated to the head and can affect the face, neck and shoulders as well.

Sensitivity to light (this is a huge one of me, I live in the Batcave) it can be so bad during an attack I can't even stand the light of my powerboard.

Sensitivity to sound, some people may find the spinning of a fan unbearable.

Sensitivity to smell. Anything from flowers to strong perfume and food smell can make a person feel very ill.

Sore skin, being touched can hurt.

Aggravation by movement/changing in position. Imagine being worried about getting up to use the bathroom because you know your pain will go from severe to "oh my god I want to die." When I am very bad, I have to spend around five minutes going from lying down, to sitting up to standing.

Tingling and numbness.

Facial drooping.

Nausea and vomiting. I have often said that if it was just pain, I could cope (bullshit) feeling nausea is horrible.

Brain fog. This can be so bad that people can forget very basic things.

Emotional ups and downs, being in pain can be really rough.

Triggers

The heat/cold.

Getting not enough/too much/poor sleep.

Certain foods.

Alcohol

Strong smells, I cannot use public transport without serious planning because most people don't know how strong their perfumes are.

Too much/too little/any exercise or exertion.

Changes in the weather. I used to love the rain, but I had to stop taking a drug due to its side effects, the rain now ruins my day.

Treatment Information/Treatments

A neurologist is the main treatment doctor.

People have to keep headache diaries.

To be diagnosed with a migraine disorder a person has to have more than head pain and/or head pain a certain number of times a month.

For some treatments a person has had to have others fail.

Emgality

Emgality sends people into remission. However, its use is limited because the body devolves antibodies. Imagine finally being pain-free years after of trying, then having something that works fail a year down the line, that's what many Emgality deal with.

Emgality is an auto-injector that goes in just below the skin, the is less body fat you have to more it hurts. My pain ruins my appetite and I'm thin, had it worked for me (it didn't) using it would have been difficult as I found the injection very painful.

Emgality can be very expensive.

There are two initial injections then one, once a month. They need to be kept in the fridge.

Botox

Botox can be very effective, it consists of up to forty injections every 8-12 weeks in the jaw, forehead, scalp neck and shoulder. I don't find these painful. In the case of where I live, the co-pay is every 12 weeks.

It is nothing like the botox you get for wrinkles.

Protocols for getting botox can be very strict, like all other treatments, botox can become ineffective over time. In the case of where I live, you had to either have had 8 days a month with migraines and/or 15 days with head pain.

Cost without a co-pay can be in the thousands.

Continued treatment with a co-pay may mean botox has to be effective after two rounds, it can take up to four for things to really work.

I start feeling it wear off at 9 weeks, which means for three weeks I am back to 5 pain days a week. This is very common and is mentioned in a lot of botox information.

For me the injections feel like being grabbed by tiny little hands.

Many people (myself included) get a post-botox migraine, they are not fun.

For some people botox does nothing or makes them even worse.

Below is the most basic injection map, I and many people I know get more than what is listed. It varies from person to person and often takes multiple rounds to find out what extra sights are helpful.

Preventive Medications

Daily pills that can be anything from anti-depressants to epilepsy medication.

They may work wonders, but side effects can ruin them. These can include, damage to internal organs, serious changes in weight, brain fog so bad you can't function and some drugs cause fetal deformities.

Most people will try a lot of preventive before they find one that works, some people will never find anything.

Daily cannabis can also be a preventative, both CBD and THC.

The list below is the most common

Abortives

These are used in the prodrome or attack phase.

The drugs could be triptans in the form of pills, injections and nasal sprays, muscle relaxants, sleeping pills, antihistamines and opioids and other pain medications including cannabis (both CBD and THC).

Other options.

A dark, comfortable room.

Heat and or cold treatment.

Magnesium injections and fluids.

Hot showers.

Physical therapy.

Dental treatment.

Roll-ons, creams and pain sprays with or without THC and CBD.

Tips on writing

Suggesting things like drinking water, doing yoga, taking xyz out of your diet, getting some sun, going for a walk or seeing a therapist is a really shitty thing to do. If you're doing this in your writing, then try to show it for what it is, an invading experience that happens over and over and over again. It's really nice when someone I know calls a person out on this.

Miragine sufferers often force themselves to function, if your character has a migraine and they have stuff to do, show that it's hard for them. Show that they are angry and distressed and want nothing more than to go home and rest and be out of pain.

Show the desperation that can take place. There are times I would have done anything to get out of pain. I would do whatever I could even if I knew it wasn't going to help. When all you can think about is how much pain you're in you will do anything to make it go away.

Being in pain all the time can make your normal abnormal, I can function fine at pain levels that send some people to the ER. You have no choice but to cope and many people (myself included) grow to dismiss their pain. Putting into words "it doesn't matter that I can't even keep water down or that the light shining through my eyelids makes me want to die, there's shit to be done."

I have cried when people have told me they have believed me, Many people do not want to be looked after, they just want to be acknowledged.

Fiction around someone looking after someone else can be wonderful (it's a part of many of my fics) If you want to write a caretaker fic/screen have the caretaker ask what the person needs, have them do research and show them being an advocate.

Please DM me if you have any questions.

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