Monday, October 29, 2018

How to say and do the right thing for someone struggling with chronic illness

If any of you have recently watched the first Deadpool movie, I'll refer you now to a the scene above in which Wade Wilson goes on a mini rant about cancer to his girlfriend Vanessa.

At the end of the scene he emphatically states: "And under no circumstances will I invite YOU to this (shit) show!"

That got me thinking about the role of isolation in Chronic illness.

It's generally well known that being socially isolated makes people more likely to develop mental and physical illness... so it's obviously a good idea for someone already prone to these things not to be left on their own for too long right?

So why do we have such a problem showing up for our Chronically ill friends?

I'm assuming it's not because we don't care. On the contrary I'm fairly certain the reason we don't show up is because we don't know HOW. But if we keep a level heald about it I figure it's pretty simple.

We all get taught to think about illness in a certain way. From childhood illness is described as follows:

1. Something that can be managed by consuming healing substances or getting procedures done and resting.
2. A state in which you should more often than not isolate yourself from others and withdraw for a time to heal.
3. It is thought of as a state of being less than a normal human. Something is WRONG with you. You're not fully at capacity.
4. You are only given a fixed period in which to convalesce. When you take too long to heal, others may judge you as being poor at caring for yourself or you are lying about how ill you are.

So lets take those four things apart a little more.

1. Something that can be managed by consuming healing substances or getting procedures done and resting

This is I think one of the main reasons why chronic illness perplexes healthy people. How do you interface with someone who cannot take something, or receive a procedure, convalesce a while and then heal? What is this voodoo you speak of in which you just STAY SICK?

This is because unlike normal illnesses, rule one of healing from chronic illness is that even when you take all the medicine and rest all the time and do all the are still going to have days when you are as sick as most people's worst day of the flu and this won't meaningfully alter based on anything YOU DO.

There is no control you have over whether or not you will continue to be chronically ill. There is only control over how you deal with being chronically ill.

This can be hard for people to accept. It's terrifying for healthy people to imagine such a thing. A sickness that doesn't heal? A damp in your performance that doesn't go away? That experience of rubbing up againsts such human frailty can make people feel a bit awkward and stressed. It might remind them of losing a grandparent and watching their decline for example, and bring them to a confrontation of their OWN mortality.

This can make being around a chronically ill person uncomfortable and even emotional for a well person. But it's really important that friends dig deep within themselves and GET OVER IT. You see, we have those same fears....but for us there isn't a way to avoid confronting them. It literally lives with us in our body. If we can live with it day by day, I'm pretty confident you will discover you have the strength if you challenge yourself.

By all means, if the feeling overwhelms you do something about it. We do. Speak to your own doctor or therapist about your fears. Talk to a parent or a priest. This is what we do as chronically ill people to find the strength so there's no reason you shouldn't do the same.

But do that work, if you love us, of getting over being afraid of being us.

2. A state in which you should more often than not isolate yourself from others and withdraw for a time to heal

Staying home and healing up and not making a nuisance of my sick self in public is totally a valid thing to do when I have a cold that passes in three days. But when you have a chronic illness there comes a point when like it or not, my sick self is going to need to be about my business. There's simply no way around that.

Being chronically ill means doing things while you are technically so sick you should be in bed, or in hospital. This is another one that hits healthy people in a hard way. Because they have never had to get up and keep going through terrible illness, many don't realise it's actually a thing people do who are chronically ill. They somehow naively believe that being chronically ill is like having your period. You're ill...for a few days a month every month. They often cannot fathom waking up deeply tired, crushingly in pain and emotionally wrecked....and still getting out of the house and doing a days work.

I would challenge anyone who is healthy but wants to understand the experience a little better. For a full month, you are not allowed to brush your teeth, comb your hair, or wash unless you have done an extra two hours in the gym.

This will serve two purposes. You'll be tired as hell. That's something chronically ill people understand well. You will feel stiff and sore all the time and everywhere. Check. You'll want to shower and brush your teeth but find yourself skipping it because the thought of those two hours in the gym will simply be too much some days. You'll discover that wet wipes, dry shampoo, hand sanitiser, and deodorant have off-label uses you never dreamed of. And you'll be RIPPED if you manage to keep it up.

IF you keep it up.

Because pulling an extra two hours in the gym each day is a lot like being chronically ill. The amount of extra energy, time and physical discomfort involved can be somewhat mimicked by doing a really hard workout.

If this thought experiment is sufficient to give you ample empathy for how not cool that might be, skip the gym if you want....but remember that I don't ever get to skip being chronically ill. If I don't "go to the gym" of dealing with my chronic illness, chances are I either land up in hospital, or lose mobility or the ability to speak or think straight,  or in some cases some people with chronic illnesses can even die if they skip a day of showing up to the work of their illness.

And there's generally not a point where caring for your chronic illness means you get FITTER. Unlike working out, you don't get buff from being chronically ill.

3. It is thought of as a state of being less than a normal human. You're not fully at capacity.  Something is WRONG with you.

When you have a chronic illness, you're never going to be at full capacity ever again. You're now forever going to be someone that is checking their daily capacity, and based on a few factors the most of which you do not control, you will wake with some fraction of the percentage of energy and ability that prior to chronic illness you'd have considered your best day. Having your best day is like having your birthday or winning the lottery.

So there is something here we need to address. People who are not at the same capacity for work as other people are not broken or lesser than or subhuman or WRONG. Your worth as a being isn't determined by your CAPACITY FOR WORK.

This is something that's become really entrenched in our capitalist industrialist society, and it's a dangerous belief. Being a good friend to a person with a chronic illness means leaving this limiting belief behind. Our lives have inherent worth, meaning and purpose even when we cannot work.

Not being able to work is not a form of weakness, or poor judgment, or a flawed character. Being chronically too ill to work a normal job or any job is just a reality of life with chronic illness.

There are many ways to be of value to your community even then. I run a 5000 person strong community support group online, and coordinate relief efforts for members of my community in dire straights. I support parents in rearing their children with chronic illnesses like Ehlers Danlos Syndrome and provide them with information and guidance towards resources and support for their families. I also write these blogs and articles and create lessons for people who use alternative means of communication to learn about topics like science or biology.

These are all things I do sitting in a chair in my room, or in bed. I do not work in the normal sense of the word. But because I do these helpful things when I can do them and  I have people who support my patreon page, or my paypal account or send me funds to my backabuddy page. These things all allow me to live despite no having a normal job. This is just as valid a way of living as having a 9 to 5er.

I'm not able to work...but my life has worth. I'm at full capacity for being ME.

4. You are only given a fixed period in which to convalesce. When you take too long to heal, others may judge you as being poor at caring for yourself or you are lying about how ill you are.

People keep expecting me to get better. This is...perplexing. I mean, many of them have known me for decades. Still...they keep expecting me to have another answer when they ask me "How are you?"

Don't ask people with chronic illness how they are. Ask them how they are TODAY. Or better yet, ask them what they are doing right now that's interesting and fun for them. But don't expect to get a different answer than the one you've been getting for the last week, or month, or year, or decade.

Chronic illnesses don't heal. There's no period of healing that will fix this. There's often no treatment or cure. Knowing how I'm really doing won't really help you be my friend right now. I know you don't really get it. You aren't' someone with a chronic illness. You need to accept that's a part of MY experience you cannot empathise with. GET OVER IT.

I have.

What does help me is you accepting that me not getting better and me still being a mess 6 months or 6 years or 60 years later is OK. Not getting better when you're chronically ill is perfectly valid. I don't need to perform wellness for people who accept my illness - and that takes enormous pressure off of me.

BE someone who accepts my illness as much as I do.

What can you do to help though? Well, there is actually a lot! And it's at all different levels of intimacy, commitment, effort, and cost to you so you can always find something nice and helpful to do to support a chronically ill friend no matter the circumstance. Sometimes it just takes being a little more thoughtful, asking the right questions, and thinking outside of the box:

1. Ask me how I'm doing with my daily regime, or whether there have been any new developments in my treatments or management. Understanding what I do to be well will help you find ways to pitch in, or help me do those things more easily. Chronically ill people often like to relate these sorts of things to each other, so they might be willing to tell you too.

2. There are great ways to engage and share in my journey of wellbeing. Talking about your own health is fine, and I do care to listen about what you're doing in your life too...Just remember not to pitch in with advice from your auntie who sells Herbalife or this cool article you read on Facebook. You aren't here to give me advice, you're here to get to know the things about my health that matter to me, and maybe help me do those things. Keep the backyard doctoring in the box. if I need your advice, I'll ask.

2. Share in that path by offering to support me with something. If I'm a forgetful person going through a rough patch, offer to check in on me for a while to help me remember to take my meds each day, or make a point of helping me catch up on difficult chores once every few months. This can just be a quick text message or coming round to take out my trash for all of five minutes once a week. Little things for you are sometimes big things to us.

3. Drop in once every two weeks to come to visit a housebound friend and bring them a treat. When you're finding it hard to go out or get fun things in your life, being visited can be amazing. Being visited regularly gives structure and a sense of security in a friendship that can be very comforting, especially for a chronically ill person who may feel depressed and isolated.

4. If you're flush, set up a weekly takeaway delivery to a sick friend's home. Not having to cook one night a week can be a real joy. Better yet, bring your sexy self over and come to watch a movie with us on Pizza night!

5. Check in from time to time with us whether we need any physical or mental support of a particular kind. Having another fruit basket or slab of chocolate is charming, but having a friend who will ask me what to get me or how to help me is GOLDEN.

6. Call me just to tell me about your shit. I mean I'm REALLY tired of talking about my shit all the time. I've got to deal with this thing 24/7 and I probably see my doctor more often than I see you. You don't have to talk about this illness of mine ALL THE TIME. I actually want to know what's up for YOU.

7. Make group outings accessible for me. If you're all doing a ladies night, choose a bar that has an access ramp. Or try going at a time of day or day in the month that I'm actually feeling up to going along - check in with me when that is and help me coordinate when this goes down so I can bring my best self to the party that day. Give me a lift if it's hard for me to drive, or be ready to jet me out of there fast if I pass out or feel ill and let me know you're prepared for those things and I'm totally still welcome. Because I'd just stay home and miss out before I put that on you without your say so. Give me permission to be a drag.

8. Help me prepare to go to places I need to go. Sometimes I don't need someone to do the thing, I just need someone to sit with me while I do it. Many people with cognitive issues like brain fog or executive function problems just need help from someone in the room offering them pointers on what they were doing and why they were doing it. It's a low maintenance way of giving invaluable support. If I've got a big appointment that's got me rattled, having someone there to ensure I am dressed and ready on time and geared to go takes enormous stress off me, even if they don't actually dress me, or do anything but talk me through the prep.

9. Carry emergency supplies for my care when we hang out. I know you're my true friend when you keep earplugs in your cubby that are there JUST for me, or you have a stash of tranqs in the glovebox that you keep around for in case I have a panic attack in public or you keep sachet of electrolytes in your bag in case my POTS hits, or you know where I keep my epipen or insulin shot. It's the little things...

10. Remind me often that canceling plans or rescheduling is ok. I live in fear that letting you down will mean you dump me as a friend. It's hard when I am often not able to share in adventures with you, or visit because I'm ill. Reminding me that you'll love me even when my being ill robs us of time together will help me feel safer making plans with you to go out and do fun things.

If I think of more ideas I'll add them on later, but that's my best for now.


Wednesday, September 26, 2018

How do we best support our neurodivergent child?

The Amazing Adventure

It's natural for parents to feel at a loss for how to proceed once they become aware of the fact that they are raising a neurodivergent child. With the strong opinions the community holds about therapies that seek to conform neurodivergent children to be more neurotypical, parents often feel cornered and lost without a way forward.

 This is a blessing not a curse. This is a moment for you to pause and embrace the truth: Nothing is ever in control. We don't know where this is going and that is OK. There isn't necessarily a way you should be going.

The answer is as simple as it is profound and challenging: You control the way forward. You can make your own way, or follow a road well traveled. There isn't a right choice all made up for you yet. You get to DECIDE.

Don't shrink back in fear! Revel in this adventure before you! All those opportunities and possibilities yet to unfold which you will have the privilege of sharing with your child as they grow. Embrace this adventure!

A life yet unlived. A story yet unwritten.

It's important to acknowledge that parenting a neurodivergent child can be extremely challenging and that children who are neurodivergent often need unique support and intervention for reasons that vary as wildly as the colour of wildflowers.

Still, there is no set outcome we are sure of. There is no script that can tell you how your kid is going to develop going forward. You must discover this as you go along. That uncertainty is uncomfortable, but in its wide expanses lies a lot of freedom too.

Let's focus on the vastness of possibility instead of the narrowness that we are encouraged to experience when a diagnostic label is chosen for a child by the medical fraternity. We can acknowledge that the label informs us about possible needs our child may have in the future without growing attached to any of those hypothetical future stories for their lives.

Showing up is half the job

Understand that parenting was always going to be one of the the hardest things you will ever have to do. All parents experience despair or directionlessness at times. Don't get stuck in that. If you feel like you can't get out of it, you need to seek support for that struggle not just for your child but for yourself. Learning to meditate and ground ourselves so we can be mindful of what we are bringing into the world is a crucial part of being a more attuned parent.

One of the great ironies of life is that very often the answers we seek are already inside of us - we sometimes just need a way of unearthing them. Spend time tending our inner world, your subconscious wisdom, and seek therapy if you feel you may have some troubles that are not yielding to your earnest efforts to overcome them. There is no shame whatsoever in seeking guidance - every culture has the tradition of seeking the wisdom of a shaman or Oracle. In this culture, we often call them therapists, yogis, gurus, priests or even our own parents.

Asking for help is a sign of tremendous courage. Ignorance and complacency is a far easier path, so if you're out there beating the bushes for answers or opening yourself up to the advice of others you're already doing an amazing job just by showing up. Give yourself a cookie and a hug for passing good parenting 101: Showing up.

Give them a voice 

Carl Jung wrote, "Nothing has a stronger influence psychologically on their children than the unlived live of the parent." Often our own priorities as parents are not actually what is in the best interest of our children. Being able to hold space for our own anxieties and fears, both for ourselves and for their future but then returning to be present with the experience of reality is key to preventing our own agendas from dominating the lives of our children.

Furthermore, the relationship with our children needs to be divested of power struggles and violence even in it's subtlest forms such as manipulation and passive aggression, and it needs to be radically accepting of differences between you as individuals so that the vast freedom we are all born with is not constrained by the will of our parents for our lives or their ways of doing for themselves.

The more intimate and yet accepting your bond, and the less of your own ego you bring to your parenting, the more you will discover you are making headway with them. You may discover that your perception of what their problems are may not always reflect their experience and the best guide to what path is best will come from your child themselves.

Learning to hear their voices in a million ways is the most powerful thing you can do to raise them well. for many children, this may actually require some very active listening and some very active interventions such as augmentative communication strategies but in those cases, this becomes even MORE important as often the only person willing to hear them will be YOU.

Welcome to the revolution

Society projects an enormous number of expectations onto every living being. We are trained from our first to practice conformity. Especially for a generation of parents raised in institutions - schools, or universities, or churches or clubs - our agency was often denied from a young age. We were taught to passively accept a path that was proscribed for us. Walk in line. Sit here. Listen, do not speak. Obey your elders without argument.

In a culture of conformity, being an outlier is a radical act. Being willing to refuse to be conformed is a form of defiance in a culture that values people falling into line and sticking with the program. Neurodiversity is an involuntary form of defiance in the face of pressures of conformity.

We are not able to conform because we are not wired for it. We cannot fall into line without harming ourselves. We must be radical or die to self either literally or metaphorically. Our nonconformity isn't a choice, it is our nature and we cannot hide it without paying a devastating cost.

That cost is one that we frequently pay with by forfeiting our mental and physical health. The average lifespan on an autistic person is less than 40 years old. The suicide rate is 28 times higher than the average. It is obvious that the way that we have been caring for autistic people up to now has been causing them to die young. Similar statistics exist in other forms of neurodiversity like ADHD also. Protecting a neurodivergent child from the force of conformity that society is placing on us is the most powerful gift a parent can give.

To do so you must be willing to be a nonconformist yourself...and that can be terrifically hard and scary. But if our parents will not take on this challenge, who will? It is crucial to our survival that they find the courage. I believe that in the heart of every parent is a fire of love strong enough to fuel that courage if they let it, sometimes they just need a bit of help getting it going or directing that heat in the right way. We can never fail so long as we continue to try.

Give them somewhere to belong
As a child reared by radically nonconforming people who ended up being pretty messed up people themselves, I can say this: Even if you screw up terrifically as a parent, if you do so while trying to hold a space for me to thrive I will thank you for it anyway, from personal experience.

My parents were a pair of hot messes....but the one thing they nailed was making sure I knew that being neurodivergent wasn't something I needed to fear or feel ashamed about, or some curse or divine blessing or a calling or a duty or anything holy or unholy. It was natural, right, good and just as the world ought to be (When the world is as it ought to be - diverse and comfortable with difference. I was helped to understand that this was a world I would be called to BUILD).

My parents praised my gifts and achievements while reminding me I still poop like everyone else and that even if I need certain supports or accommodations to solve these problems, I could not avoid the necessities of life like eating, sleeping and keeping clean. To them, I was just like every other kid everywhere and that was AWESOME. I BELONGED to my parents. I wasn't a freak at home. Everywhere else, but never in my own home. Be that safe place for your kid.

Never forget that your child is a sentient being

Something radical you may need to consider is that some of the truth of what you need to do for your child lies ONLY WITHIN YOUR CHILD. Even while they are only able to wail and suckle, they are a sentient being. Even when they can only gurgle and eat things off the floor, they are a sentient being. Even when they are unable to speak or cannot regulate their emotions, they are a sentient being. Even when they are not engaging with you in the way you'd hope and expect, they are always a sentient being. Sentience takes MANY forms.

Don't miss out on seeing the truth of that because society has conditioned us to respect certain sentient beings over others. Don't underestimate their intelligence, their capacity, and do your utmost not to undermine their agency. Give them a chance to show you what they can do before you do it for them. Give them choices as often as you can and let them bear the consequences so far as you can bear to do so without harming their young and trusting souls. Be there, ready to assist, but always assume the possibility exists that they will do it themselves one day given time, patience, tutelage and when needed accommodations or interventions that support the independence they are capable of.

What specific tools you use to educate them, or healing you seek for them will be right for you at the time given what you observe and what you know and what you have to give. We do the best job we know how to do. Be sure you know as much as you can - not just in terms of outside education - but in terms of truly knowing the will of your child for their OWN lives. Parenting shouldn't be about a power struggle or parochial care or patronage. It should be a partnership.

Children are people too

Never desecrate that bond of partnership with cruelty, cowardice or needlessly controlling behaviour. Be able to apologize when inevitably do because you are human. Model that ability for them so they know how it looks and can learn by example to be kind and humble in turn. Having the courage to be vulnerable is a superpower. Be vulnerable, most of all, with your children. They want to see you. You are the center of their universe. The most powerful things my parents ever taught me were things they taught me in moments where I could see their inner selves and they were teaching me from their hearts.

Lessons about who we were as a family. Lessons about how we were. Lovesongs they sang to me in my crib as an infant, over and over, became the mantras that soothed my deepest fears. Those lessons became my religion during times that I lost my religion. Your words and actions are written on the tablet of your child's soul. Mind what you write there.

Show them how it's done

Learn to be deeply, profoundly honest both with them and with yourself. Don't create a division between parents and children when none need exists. You are people. Be consistent in how you treat PEOPLE, don't have dual standards for kids and adults. Do unto children as you would have done unto yourself. Your kids are going to notice your bullshit and it will never fly. Don't play games with your kids, try to be real. Often neurodivergent kids have an uncanny ability to unmask our subterfuge as parents. Be able to deal when they do.

If their behavior affects you, let them know. If you need space, say so. If you need something from them because you are scared or vulnerable, don't hide behind bluster or authority. Often a straight and honest explanation of the need for something, especially if it is personal for you, will be all they need to hear to comply. Give them all the information it is safe for them to have about why things are necessary to be done, and let them decide how to work with you to resolve the problems you face as a family and as individuals in that family.

Parents can negotiate with their children just like with anyone else. The older they get the easier and more effective this strategy becomes. Keep on trying to implement it as soon as possible until it starts working.

Know yourself, and embrace your roots
Knowing where you come from is as important as knowing where you are going. In fact, the one cannot proceed without the other. Understanding yourself, and your family roots help you make better decisions about how to go forward. Children without roots cannot anchor themselves and stand tall. Learn about your past and your history.

Share your culture and your identity with your child from a young age. Always remember that your child will be the maker of the new world you will spend your old age in. Teach them about the beautiful things you want to preserve in your world, and how to build beautiful worlds, and how to be beautiful people. You do so by teaching yourself first, and then showing them what you've learned by example. Learn first to be an ambassador for your own people, a leader, and do them proud, then teach your child about the sort of people they come from with pride.

Trust yourself

I have been taught that success is a combination of Chutzpah and Humility: Having the nerve to speak your truth, the humility to know you don't hold the whole truth in yourself. As a parent, you're going to need to find the Chutzpah to stand up to the whole wide world and draw a ring around your child's mental, emotional and physical safety. But you will also have to bring the humility to know that the only person who knows your child through and through is YOUR CHILD.

Get them in on this whole endeavor of rearing them. they are the primary stakeholder in this project after all, and they deserve a voice about the goals and outcomes the project aims to achieve. Even if the only decision they can make right now is whether or not to let their carrots touch their mash, let them have those decisions as far as it is possible to do so. They need that practice to learn to trust themselves in making decisions in the future.

Being given that freedom (and the opportunity to learn from our consequences) teaches us to be wiser and smarter. So give them that freedom as soon as you can. And never forget to give that freedom to yourself. Like. NOW. Start now to decide to make your OWN way going forward. The choice is YOURS.

Monday, September 24, 2018

Treating Sensory Sensitivities with cheap supplements/lifestyle changes

Treating Sensory Sensitivities with cheap supplements/lifestyle changes
Today someone asked me a question about this in my autism group, and I didn't know how to easily answer it. I have this wild jumble of things in my head but no simple reply. I decided to write up something proper as my reply!

The thing is, many kinds of SPD are actually a result of certain physiological issues at a cellular level. 

Treating these issues with off the shelf really fairly cheap supplements can offer rapid relief at a fraction of the cost of other treatments. The catch?

Because there are so many different possible kinds of issues that need to be looking for it can be hard to know where to begin. This is because the chemistry of these problems look a little something like THIS:

First of all, one must grasp that sensory sensitivities are caused by misfirings or misprocessing within the brain or the nervous system. Many of these processes depend on ion pathways that operate across the cellular walls. Sometimes that pathway is dysfunctional in those with sensory sensitivity due to any number of factors, genetics, illness, and diet being notable factors.

When these problems occur due to a genetic proclivity towards such problems, they are known as ion-channelopathies

The issues lead to intracellular or extracellular deficiencies of potassium, magnesium, calcium, sodium or other needed ionic substances (see illustration above). Of these Potassium and magnesium deficiencies appear to be the most common in the autistic community.

Because of the codependence of Potassium on Magnesium, and Magnesium with Calcium and all of their entanglement with Sodium ( and a host of other substances too numerous to mention here) the others are often also not being absorbed or used as they should and may be out of balance. All kinds of drama ensues, so resolving this problem can often really support a lot of different health problems people didn't even originally connecto to sensory processing problems.

Many of autistic people's "weird" behaviours are actually ways of self-medicating these issues...but more on that later on in this piece.

How do we treat this thing?

Treatment consists of multiple steps. The first acute managment is through direct supplementation with the substances you are deficient in.

Secondary management involves dietary changes to address the poor ion channels and any other health issues that are contributing to the problem. Often a good supplement to take is an omega fatty acid supplement or adding coconut oil to your diet as this improves the structural integrity of the ion channels themselves as they are made of fatty acids.

Lastly exacerbating factors need to be addressed to support the weak ion channels, as direct supplementation is often of limited long-term efficacy, and must give way to more individualised management later on.  Examining your health and habits, in general, will be important. Lifestyle adjustments will need to be made that go beyond just diet or supplementation.

What's going on in there?

I am bad at this bit, but my friend Tania explains it better than I can using the example of our friend Benjine who first discovered these connections and brought them to our attention. She has a video about this HERE.

The long and the short of it is that you have problems with your nervous system as a result of your voltage gated ion channels being broken and you need to streamline the efficiency of this system to improve it's function. This can be done through diet, and through reducing "drag on the system in the form of other health problems that make the issue worse.

Managing other health issues that exacerbate symptoms: 

Some conditions that are involved in aggravating these issues are inflammatory or immune-mediated disorders like Endometriosis, Mast Cell activation disorders, or rheumatoid arthritis. This is due to the relationship between inflammation and it's effect on the cell's signaling and function.

Addressing the source of the inflammation must always be part of management. For those who have comorbid chronic illnesses like Mast Cell Activation Syndrome or Endometriosis, a broader program of management will be needed to control the issue, which will include management of inflammatory markers through dietary adaptations or supplements as well as other lifestyle alterations and treatments targeted at treating the underlying conditions. For those not familiar this is stuff like anti inflammatories, anti histamines, or allergy avoidance diets etc.

But be mindful that direct treatment with anti inflammatories like COX 2 inhibitors can cause bigger issues further on down the road. For more detailed information visit for a long discussion of complications that can arise due to inflammation and the impact of superoxides on the health of cells.

In these situations the work of my friend Benjine Gerber at comes into play - this website explores more deeply the relationship between inflammation and sensory issues. Since it is too much to cover here, I'll go into it another day, but keep in mind that making sure you have an ample supply of antioxidant-rich food in your diet is a good plan, and bumping up your arginine content might also be useful. Certain anti-inflammatory foods and foods with a low histamine content may also benefit many with these problems.

Here I'll pop in a note to those with gut problems that your gut issues may contribute to this, and on another day I'll do another post talking about salicylate and oxylate intolerances and how they tie into these issues....but that's another talk :)

Meditation is an important part of any management program for almost all health issues, and in this case, can make the difference between long-term success or failure, so don't keep meaning to take it up, start watching some videos by Tara Brach (my personal guru) TODAY.

How to know if you have an issue:

Those in the autism community frequently show a particular pattern of issues, and it's so common that anyone experiencing sensory sensitivities aught to try this out.

 We have a good shorthand first-line option for this that usually works for most (but not all) people. We normally start on a course of Trisalts or Multiforce alkaline powders for immediate relief within two or three days.

If you want to get testing beforehand, a blood test to assess your deficiencies in these substances may be useful, but be warned that intracellular potassium deficiencies cannot be detected by blood tests. As an example, I'll talk specifically about potassium/magnesium deficiencies.

Symptoms are: 

1. Fatigue, difficulty with sleep
2. Weakness, loss of muscle tone, spasticity, fasciculations
3. May be involved with blood sugar dysregulations ie. hypoglycemia
4. Muscle cramps, aching, stiffness and tenderness, touch sensitivity
5. Tingling or burning in the hands and feet, numbness, need to move, restless leggs.
6. Loss of coordination (if severe can lead to ataxia and paralysis)
7. Digestive problems, gastroparesis, gut cramping, upset tummy or constipation
8. Heart palpitations, feelings of anxiety
9. Difficulty breathing, "forget" to breathe, "weight on chest", poor circulation
10. Moodiness and emotional dysregulation
11. Light or sound sensitivities.

To recap: 

Step 1:Supplement with
 Tri-salts or Multiforce for about two weeks to establish if this benefits you. Other options include taking potassium supplements directly, such as switching to "low salt" (usually a potassium-based salt substitute) or take magnesium supplements directly, or bathe in Epsom salts regularly and take potassium tablets. Some people respond poorly to certain types of magnesium formulas or Epsom salts so your mileage may vary.

Step 2: Isolate the underlying cause of exacerbating issues such as inflammation, or gut problems etc., and address them. Figure out if you have one of the common dietary sensitivities oxalate intolerance which can markedly aggravate sensory issues. Learn about dietary support for inflammation at

Step 3:
Supplement with fatty acids to make cell walls supple. Coconut oil is good too, or flax seed, oily know the drill.

Step 4: Lifestyle changes to reduce stress such as reducing your commitments, getting supports or accommodations, changing careers etc. And MEDITATE. There's a joke Benjine makes about people who make you angry: "Don't let them steal your potassium!" Learning to be more relaxed, mindful and zen will reduce your sensory issues, I PROMISE :P

That's all! I hope this helps.


Wednesday, July 4, 2018

My rules for living as a neurodiversity advocate

CW: Annoying ableism, and other issues like mental health etc.

I've been struggling with an issue in my advocacy and even in my position as a community leader for a while now and it boils down to two ideas that I want you to keep in the back of your mind while reading this:

Accountability and self care. 

In a community that embraces neurodiversity we're always poised to slap back at ableist and stigmatising comments and responses to common everyday issues in the lives of the people we work and live with. As advocates we want to deconstruct the shame and remove the social pressure to conform that was so damaging to us in our own experience.

We want to make it right for everyone living after us.

But often times I see us making an important mistake in how we address one very common problem that is frequently bringing outsiders to the neurodiversity movement to our door banging and shouting, or worse yet...concerned and earnestly insisting on intervening in the life of a neurodiversity advocate:

How to behave in a adult, responsible, regulated and productive manner. 

As a survivor of various kinds of abuse, mental and physical health problems, drug use and also as a neurodivergent person it was always easy to say to people "Just understand! We can't HELP it!" and get huffy.

The truth is, they have a point, we know it, and we hate needing to explain it over and over to those not yet in the know.

It is our very wounds and traumas around ableism that often blinds us to the fact that even if you say on the one hand "I have different strengths and weaknesses. Those weaknesses should not be shamed or ridiculed and I don't deserve to be pressured and victimised for them."  there is truth in the statement that you're still a carbon based life form and certain skills are necessary for your survival as an organism. When parents ask us this question it isn't necessarily coming from a place of ableism. They may genuinely be fishing for information on how to support their autistic child in overcoming these issues without being an asshole.

Let's try to not be assholes ourselves and judge them for asking these real relevant questions in a hamfisted way. It doesn't help the young people we are fighting for one jot if their parents get run off every time they ask a stupid question in a stupid way and we all lose our nut at them. Try to hold a little bit of space on this k? THANKS!!

Now for the allistic allies who are all still confused and keep asking me OVER AND OVER how it is I propose their child to live in this world without something to modify their autistic behaviour..... PLEASE hear me well:

Neurodiversity culture is not a request for a licence to enable a victim complex or an excuse for letting severely disabled autistic people simply rot in a ditch

So..... unless your philosphy of life can defy the second law of thermodynamics, there are certain things a body has got to do to live, whether it's a disabled or neurodivergent, or not. Neurodiversity advocates are not dumb. We know this.

Yet this is where many parents critique us most harshly in the neurodiversity movement. Our often unclear response to this issue gives them licence to wander off into the abusive arms of techniques like ABA that promise "independent living" and "life skills" or "behavioural control" at the bargain basement price of our dignity, sanity and health.

I'm here to set the record straight. Neurodiversity does not mean we just let the chips fall where they lie and consequences be damned. It just means that we do things in a way that is not standard, and may require some adjustments to our lifestyles, and a lot of patience while you receive an education in how this different worldview works. 

This piece on Sartre's concept of "bad faith" highlights a common psychological response to things we don't like admitting to ourselves.

Now with that in mind, dear neurotypical allies, please understand that we are not, by demanding equality or accommodation, operating from a position of "bad faith".

It is not about enabling a victim mode or finding an excuse not to have to meet the necessary demands of our existence. Implying that we are is going to get you a sharp kick in the metaphorical teeth every time you bring this up so.... PLEASE STOP DOING THIS.

For a long time I was pretty stuck on this issue of explaining how neurodiversity advocates do independance and become responsible adulting people that live fulfilling and happy lives.

Then I decided to pen this post teaching the rules I have made for myself about how to be a successful neurodiverse adult. Allies, please pay attention.

Rule number 1: You are allowed to have "unreasonable" boundaries.

Now first off, I need to validate my invalidated ones. "I can not do that" Is a perfectly valid response for a disabled or neurodivergent person to have when confronted with something a neurotypical or ablebodied person is demanding you should be able to do. This is because being different means there are literally things that neurotypical or ablebodied people CAN do that you, as a neurodivergent or disabled person CANNOT (or SHOULD NOT) do.

And that's ok.

Remember that story about a fish being told it's should climb a tree? Well you can tell anyone telling you, the fish, to climb that tree to sod off, and you do not need to feel guilty about it.

Know when to tell people to just take a long walk off a short plank, and do not punish yourself or let others shame you for doing this.

If you spend your life climbing trees for people, you'll never get to swimming and actually having a fun life.

And here, for reference, is a neurotypical person enacting REASONABLE boundaries, just so you can get a feeling for where that line lies.

Say no to what you cannot tolerate, so you can say yes to what you love and value.

Rule number 2: Choose your battles.
I know we just want to tell everyone to sod off with their demands and expectations and lose our nut at them when they are making ableist demands. Unfortunately frequently we only end up beaten, bloody, exhausted, hungry, tired and alone. That's shitty. Ableism hurts people.

Sometimes battling it hurts double, and the gains are slow. But invest in your good allies. They are truly worth the effort.

Deciding when it's worth it and when it's not determines if we survive the fight or succumb to the wounds of battle - and our good allies are the ones who will carry us off the field when we fall so do the work of having them guys, it's worth it.

Neurotypical and ablebodied people don't KNOW you can't climb the tree. Sometimes you are going to have to bloody climb the damn thing just to tell them that "Uh... hey... I am a fish, did you know, I'd prefer if we sometimes did some things in the pond you know?"

As someone who frequently abseils ableist trees to educate neurotypicals and ableist people it is strangely rewarding to watch their faces light up with mixtures of horror and awe when they realise a fish just climbed a tree to tell them to please stop telling fishes to climb trees. It is what I live for. I am probably a masochist, because advocacy is definitely a form of self torture....but sometimes it does get triggering, which is why we come to the next rule.

Rule 3: Tolerate injustice and inequality (at minimum).

You gotta learn to take it on the nose sometimes, but know when you are too tired and weary to take any more. At that point, set a boundary.

But test your boundaries sometimes. Expand them as you grow in strength or heal yourself. If you go down with every punch, you're done for. You are going to need to educate ableist people and negotiate some sort of way to live in this crappy ableist world. You need to hold an internal structure in mind with a clear vision for the future you're building because without that you're not goint to be motivated to to this work.

This is tiring, messy work. Unfortunately it's needed work because unless you have a blue Genie about to fix our messed up ableist world you, and your children, and your children's children will still be doing this work till your dying days. But choosing your allies carefully is just wisdom, so don't feel the need to burn up spoons on performative allies and sealions.

Rule 4: Pragmatic advocacy is the only sane choice on a tight spoon budget

Advocacy logic is frequently NOT pragmatic. It is idealistic and philosophical. I does not make tea, or bake a loaf of bread. It sits upon a rock and pontificates or analyses.

However you are not a statue of the thinker. You have to eat and live in a three dimensional world with real constraints and unfairness and injustices.

Sometimes just rolling with the ableism is the only way to actually live long enough to make change possible. But if you're on a spoon deficit you cannot afford the luxury of just living it large.

So do work on becoming more resilient to the stress of being exposed to ableism during advocacy work, but definitely learn how to just let it go when that's expedient. Don't judge yourself (or other advocates) for not taking something on. See RULE ONE.

Get over it. Get on with it.

Rule 5: Be real

Most people you meet won't get you. That's ok. But if you're real, and you stay real even under pressure, you will find a few people who will follow you to the ends of the earth. There is nothing more powerful that watching someone who you know is in deep struggle and imperfection ace a landing they worked on for weeks. Don't feel the need to be perfect, let people see your struggle. It's part of what makes your achievements admirable and will grow their respect for you and give them room to share their own vulnerabilities with you which helps people feel connected and less lonely.

Authenticity builds connection and strengthens communities.

Rule 6: You are always responsible for your reactions, even when you're ill

This one is a riff off of drug rehabilitation culture. The long and the short of it is that although allowance should be made for your challenges, at the end of the day the responsibility of becoming a person who is living harmoniously within your environment REMAINS WITH YOU. Whatever crappy hand fate dealt you does not alter this.

Nobody owes you space in which to be abusive towards them. You are still responsible for doing whatever you can do for yourself, by yourself. Getting up and going out to get every last drop of the help available that you need to be a healthy individual is ALWAYS something you can do for yourself. What help is available to you may vary from person to person, and how much you can do for yourself may be limited by illness or circumstance, but there is always SOMETHING you can do for yourself. SO DO IT.

Most of the time the reason you are out of control is because you still have work to do on setting your boundaries and keeping yourself within safe functional limits, and no third party can really make that happen for you. See a therapist or speak to a healer or simply sit on a rock and think VERY HARD about your life. But bottom line is THIS ONE IS ON YOU.

We do not hold space for abuse and enabling of self harm.

Rule 7: Being part of my cockpit crew is a PRIVILEGE. 
Choose to place your energy only in the people who form a family who loves and accepts you JUST THE WAY YOU ARE. Be accountable TO THEM ONLY.

This will not necessarily include your actual blood relations. That's ok. Many of us have to lose our relations to gain our families.

Remember that you ALWAYS deserve a place where you are not scared that people will dump you if you totally wipe out. These are the people you need to justify yourself to because they have the commitment to see you both at your best and your worst without wigging out, and they are more likely to have the good judgment to know when to smack you on the nose with a paper, and when to give you a hug and tell you you did a good job.

You are not accountable to society at large, but you are accountable to your chosen community.

Rule 8: Breathe, validate yourself and pull yourself towards yourself
Some days you will be your only ally. You will be all you've got. Believe in your capacity to pull this off. Be brave. Put yourself out there. And remember to give yourself the pats on the back, hugs and comfort you need even when nobody else will.

Rule 9: You have rules that are unique to you
Learning what works for your unique brain is the essence of neurodiversity advocacy and acceptance. We are making room to allow you to do that. You deserve it. You deserve that freedom to have rules that are just for you, that let you live a good life. Don't try to fit into the ruleset of another person.

Rule 10: Adress your physical health issues as a matter of priority,and don't allow yourself to overwork 
Autistic people tend to get diagnosed because they physically and mentally fall apart. Understanding why that happens (1 and 2 and 3 and 4) is crucial to preventing this from continuing to be an issue.

One of the major reasons we melt down is because we are being forced to tolerate pain and illness that neurotypical people would not tolerate, but because we cannot express ourselves or advocate for ourselves we get bullied into just pushing through our stress, exhaustion or pain. This turns into a bad habit of not resting or recovering when we need to - which leads to meltdown.

Being victimised by ableist people all your life to believe that you are lazy, you complain too much, that you're inadequate in some way will cause you to become overcompensatory. You'll work three times as hard on something, maybe only get half as much done and then still feel bad about it if you're working with an exhausted vessel.

Learn to stop BEFORE you're tired. Walk away BEFORE you get irritated or annoyed or upset. Say no even when you think you might have the spoons after all. Save up those spoons in a bank for something big you care about, don't live from pay check to pay check (metaphorically speaking), just making it barely through each day and collapsing into bed.

Neurotypical, ablebodied people don't live this way. If they had to live the way most autistic people do they would commit suicide or end up in a psychiatric ward....just like we do.

So let yourself off the hook. Go to bed. Stop. Don't do more. It's ok. Get some rest. You don't have the same brain as other people who are pushing through and carrying on. Don't try to run yourself like a pickup truck when you're a Ferrari.

Don't hold yourself to that external standard of performance or worth.

Those are my rules!!

I hope some parents or spouses see this and really take the ideas to heart.  You job is to help your neurodivergent friends, family or children to adapt these ideas for themselves because I think it would make an enormous difference to their well-being.

It will also affect the relationships with their children or partners. Helping neurodiverse people learn to protect ourselves against an ableist society, and supporting us in the process of instituting healthy boundaries and best practices for managing or shielding against the stresses of being neurodiverse or disabled in an uncompassionate world can help us be more engaged, positive, relaxed, happy and calm which will rapidly deescalate any hostilities we are showing, and help us prevent meltdowns or other behavioural issues.

PS for allies reading this:

Saturday, April 14, 2018

We are all different and that's ok, or Why you should disclose your child's diagnosis to them young

CW: Bullying and victimisation stuff.

On the topic of whether to reveal a diagnosis of autism or ADHD to a child young:

I am personally against hiding any confirmed diagnosis with the potential to affect a child's quality of life, especially if it causes cognitive impairments....and the reason will probably strike you as obvious once I'm done explaining.
When you have cognitive impairments, such as with executive function, you know. You know the way that people who are sober now will know they are drunk later. They won't know WHAT they know, but you know because you live in your brain and it is always part of your awareness.
If no explanation is given you think what you are experiencing IS EXPERIENCED BY EVERYONE. You may misunderstand fundamental concepts explained to you about how consciousness, concentration, awareness, attention, focus, discipline, effort and intentionality works if you aren't told that your experience is not the most commonly described experience.

You also begin to think that you are doing it wrong. That your character is flawed. That you are stupider than you actually are, or that you're missing something even when you aren't. It leads to a certain special sort of pervasive gaslighting, invalidation and minimisation that is extremely destructive to our sense of self.

This causes you to fail to have safe boundaries in place to protect your energy and your health - when you think your best effort is normal and it's actually you burning yourself up like a sun just to do what Joe Soap can do half asleep you are setting yourself up for a lot of stress related health disorders and mental health issues later in life. This is DANGEROUS.

Let's illustrate using an example: Curly hair.

If I wasn't told as a child that my curly hair was natural for me, that my granny had curly hair, that my curly hair is normal for me and isn't at all needed to be straightened of flattened or controlled but is instead beautiful and rich and lovely, I might have been very self conscious about how ...curly ... it is.
I mean I'd watch others combing their hair and begin to feel like I must be doing my hair wrong or something because I can't make it stay that flat and I'm doing EXACTLY the same thing that Susie Q does with her hair at the sleepover but I still look like a golliwog and she's all sleek. I might have thought I was BAD at doing my hair, or that my hair was UNTIDY. I might have started to feel guilty and insecure instead of angry and offended when someone told me my hair was messy.

Or another example: Freckles

A doctor (a resident from central africa who was practicing in our hospitals here and had only READ about freckles in textbooks) once asked me whether my sister's freckles were a hyperpigmentation disorder. If we'd never been raised to understand that ginger people just have freckles (because we do, duh!) we might have had a doctor go on a wild goose chase trying to pin down what the strange illness was that was causing our pigmentation errors....and we'd have walked around telling everyone we had a hyperpigmentation disorder which depending on the context could have caused people to treat us either as diseased pariahs, or possibly mentally ill persons who are delusional and hypochondriac for supposing that freckles are a disease..... And this would develop based on what we were told to expect (which shapes the way we perceive ourselves and our traits).

BUT Hiding a diagnosis from a child isn't empowering the way some people think. It doesn't help us NOT to be told we are different. That is like conspiciously not mentioning the fact that my hair is EXTREMELY red. I mean I can see myself in a mirror....why aren't we talking about this? Is it something bad? .......

You know I'm right guys. This is how we all work.

At best, It is trying to straighten their curly hair, or letting them silently wonder why their hair doesn't comb out right. It's letting them walk around thinking they have a hyperpigmentation disorder or that the fact they are the only red haired child in the family must mean they were adopted.....

At worst it is teaching them to associate feeling sick, dysfunctional, exhausted, overwhelmed, scared, sad, misunderstood and confused - with BEING NORMAL.

You REALLY don't want that. Being weird? I EMBRACE that shit. In the words of Brene Brown, what makes us vulnerable makes us beautiful.
My weird IS MY AWESOME. And that is a lesson my parents DID teach me, alongside the truth of why my mind doesn't work the way other people's minds do.

I was made very aware of the sad fact that because the world doesn't give a rat fuck about us on the institutional level, we may need medication to survive our childhoods and that's NOT OUR FAULT.

That's like our curly hair. Or our freckles. We're RARE. But we aren't a MISTAKE.

Understanding the sad but real fact that statictically neurodiverse people are a minority, that we require different things to be happy and those things are not commonly available and we may get looked at funny for needing them (BUT THAT IS NOT OUR FAULT) helped me.
I still developed a self esteem problem, but that was mainly because my school mates and fucked up teachers used to part the way in the halls to let me through like I was Moses at the red sea, and they hectored me calling me "Stinky" and told me "You must have held up a sieve when your mom threw you with shit" and "You look like stuck your head in period blood" and "You're the laziest child I've ever known". It wasn't because I was told I was different. It was because I was treated differently, and when I didn't know why I thought it was MY FAULT.

Let's face it having things like that said to you still hurts even when you know they are wrong. But at least you cant TALK to people about it in some way that makes sense because there is a vocabulary for you to describe your experience.
Give them a reason. Make sense of the cruelty of others. Tell them the truth. But remind them that DIFFERENT is not UGLY or BAD or WRONG.

It's just the reason there are more than one kind of flower, or all sorts of different birds or trees. It's why we have shoes that aren't one size fits all, and haircolours that arent all one colour, and why we have tall people and short people and why we have different kinds of music or why not everyone likes the same things you do or eats drinks their tea the same way.... because difference is EVERYWHERE when you look for it.

We just tend to forget that the rarerst and most special things in the world sometimes only bloom in the tops of the highest trees in the amazon, or grow in the depths of an ocean vent so hot that no other thing lives there. We are extremophiles. We need special environments, we need our hothouses....but it's because this culture is broken. Western civilisation doesn''t CARE if you need a specific diet like the orchid food for amazonian orchids. It doesn't CARE if you can only grow in places that have a temperature gradient that never varies under your hottest oven setting, or that you turn to jelly when you are brought up from the ocean depths because you cannot live at normal pressure.



Autistic people have a purposeful life too. They have a reason to exist in the ecosystem of earth. We are NOT an evolutionary fuckup. The ecosystem doesn't keep trash on the payroll guys. There's far too many of us for our geneset to be all bad things and no good.

Understanding that we might be like those extermophiles. that we need special environments and special diets and special accommodations to live helps me.
Understanding that extremophiles fulfill niche roles in the ecosystem helps me. They go where no other creature dares to go and grows in untenable conditions so that we may have from the crook of a tree canopy one of the most beautiful yet delicate flowers in the world, the Orchid.
So what if you are a hot house flower? The world should be privileged they didn't have to climb a tree in the amazon to see you!

We really just need to stop feeling so bad about being different, needing support, being sensitive....
Because you are beautiful. Like. All of us are friggin wandering miracles of nature that are fully formed breathing art. We have universes inside of us, and we carry libraries behind our eyes and recording studios behind our ears and we have a band in our mouth and we are extraordinary biomechanical machines that are puppets which dance for themselves by themselves.
That's just NOT OUR FAULT.
It is our ARTISTRY.

Sunday, January 7, 2018

There's Just Us.

(Content Warning:Suicide, Rape, Violence) I want to open by inviting all the feminist naysayers. I solemnly swear to make no digs in your direction. I am not here to punch you in the face with another angry rant. I want you to really listen to me just for about ten or fifteen minutes.

I want the hard line feminists, the ones who are doing the punching, to sit down a minute here too. Please guys. Let's just get a mug of tea and a biscuit and find someplace quiet and talk. Next I want everyone to believe for a moment that everyone else here is a person with a soft heart and a capacity to love and do good. Let's give peace a chance.
The talk I'm trying to have is about why men are shouting out "What About Men!" and "Not all men!" whenever women start a conversation about female oppression.

I think a lot of us are out there just waiting for someone to hit the nail on the head. I hope maybe something I write here today will do that for some of you, because I'm really worried that we aren't making any headway settling these issues. We keep getting stuck in skirmishes around how words are used, or who's the most disadvantaged, or whether all men are misogynistic but in the end when it comes to moving forward we're simply stalled.

This is where I want to tell my story.
My partner, who is a trans woman, has been a window into a world for me for more than half a decade now. She is a deeply observant, kind and nonjudgmental person who sees so much more than I ever could. Her wisdom helps shape who I am. Through the lens of her experience as being raised natally male and then living as a woman she has always struck me as being perfectly placed to speak to the reasons why the sexes seem so perpetually unable to gain ground in ending the battle between them - she's seen both sides of the fence and been burned by them both.

Through her I have come to find myself seated in a place outside of the mainstream narratives on feminism, misogyny, misandry, gender and so many other things.

When she and I started having a discussion about misogyny and why men often have the urge to butt in with "but what about men!" in discussions on female struggle, she said something that gave me pause.

"Men are crying out for permission to speak as much as women are."

I want you to sit with this idea, and really hold it in mind.
To many feminists this seems somewhat unbelievable on the surface. Surely, if men rule the world, they are free to speak as much as they like? But in the experience of my partner and from her observations, this is not the case. I'll get to that a bit later on.

It's true that women go through an enormous amount of abuse and struggle. There's no reason to argue that everything that is said about how bad that is, isn't exactly that bad. In fact, I'd urge my readers to pause here for a moment and embrace deeply how utterly and totally at a mark most women of the world actually are, and how little most of them can do about it. We’ve all seen the statistics for rape and assault of women by now. The latest scandals around sexual assault by men in power is really just bringing home to us how pervasive this really is, and it's terrifying.
This is why feminists are so passionate. We are horrified by the suffering and we want it all to end. Feminists build shelters and start feeding schemes and volunteer in orphanages. We look after our own. And that's really important.
Obviously we need a movement devoted to protecting these vulnerable people and to uplifting the women of the world. That’s not really controversial.

But someplace along the lines we didn't really highlight fully the fact that this abuse extends to men, and that Feminism is for the protection and advancement of men too.

You heard me right. Feminism protects men. I believe sexism causes men to pressure other men not to speak, and men stop themselves from speaking to protect women due to their perception of what their roles are in relationships. Those perceptions originate out of the patriarchy, and it is the patriarchy that feminism is trying to destroy NOT MEN.
Feminism is not a women's movement.

Not at all.
Feminism is about equality for both sexes. It is a belief system centred on ending all gender inequality. I know, having "fem" in the name is unfortunate because it seems to imply it's girls only, but it's just a word and we don't have to get stuck on that. We don't need to go around saying "I'm not a feminists, I'm egalitarian". Egalitarianism is a synonym for feminism. Sometimes people mislabel misandry as feminism. Sometimes people mislabel feminism as misandry. I think we all need to take a step back in each argument on this and remind ourselves that any idiot with a keyboard can call themselves a feminist. That doesn't mean that they ARE one.
Next time before we all start squaring off how about some flaming topic, why don't we check what they are saying against the definition and just establish whether they are in fact part of the group they claim to be, or just a troll trying to chum up the waters by going in under false colours. You know there's been a lot of that lately. All that #fakenews...
Most guys pretty much agree with this idea that both genders should get the same pay, work the same jobs and get the same votes. Right guys? There's really not a lot of you out there advocating that girls should stay in the kitchen whether they like it or not. And I think right now most of you are quietly freaking out about just how prevalent rape is. You feel really frigging angry and you want to start some kind of movement to make it end. You know. Something like feminism. So what are we all arguing about?

It's usually when women start to cry out that men have the greener side of the fence that I think we begin to hit serious resistance.

I argue that belief is based on decisions made while not in possession of all the facts. Feminists are justified in tallying rapes and assaults and murders that women are subjected to and venting their valid and proportionate rage. There is nothing to be said against that. But the most important thing my transgender partner taught me is that the grass is not greener on either side of the gender fence.
Some cultures are worse than others.

My partner's side of the family are the South African equivalent of the Deep South fundamentalists. They have a passion for God, Guns and Gas-guzzler vehicles. This group gets a lot of heat in feminist circles for their patriarchal valuesystem, and they are generally not friendly with LGBT folk either - or at least that’s the stereotype. (Unfortunately in her case it’s not just a stereotype).

Something she knew straight away growing up is that boys don't cry, and if you're depressed or suicidal you "have no business telling anyone, especially the womenfolk". "Womenfolk" talk about these things. Men are supposed to "suck it up" and "stand your ground" and just "double down through the pain".
I grew up in a similar culture, and I'm noticing something that worries me. We seem to have missed the bit where men are killing men at alarming rates too. Suicide is an act of shame and desperation. It is born out of a deep seated feeling of loss of the hope of any future that is worth living for. I think that the violence and death and rape we see women subjected to is literally the flipside of a coin - the other side of which is male suicide.

In the west men are committing suicide THREE TO FOUR TIMES as often as women.(Gender differences in suicide, Wikipedia) The grass really provably isn't greener on the other side. It just looks that way because men don’t cry, and suicide victims can't participate in #metoo campaigns if they are dead. Feminists tend to gloss over a lot of how we feel about things relating to the gender oppression of men when we're writing in public or speaking in public. Doing so is often Troll bait for the kind of bottomfeeders that make the internet an unpleasant place to moderate.
But by being frank about our concern for our men, we may bridge a gap in our mutual understanding. Feminism isn't about silencing them, it's about making it safe to speak for everyone.

We tend to talk about our concerns to other women, particularly in conversations about how better to raise our sons or care for our brothers and fathers. We typically don't talk to men because a lot of the time this conversation makes them really uncomfortable, or angry.

We worry about you guys a lot because the patriarchy is destroying you.

We worry about our boys when they get bullied at school for being effeminate. We worry when our husbands get laid off at work and then spend the next six months watching sports  videos on youtube but never once talk about it with us. We worry about that article about the husband who was involved in an officer related shooting and three months later shot his wife, kids and himself in a family suicide. We worry that our sons won't learn how to treat women with respect because of the way the outside world influences them and then they'll have unhappy marriages like those of our brothers and fathers.

Mostly, we worry about your lifelong mental health.

This too is feminism.

A lot of the time one of the big reasons you can't talk about how you feel is because how you feel would leave you vulnerable to further abuse.

Because it's not in your head.

The kind of people who would rape or assault or murder someone frequently do so because they feel contempt for weakness, which due to the patriarchy they associate with being female or effeminate. And we're ALL terrified of them. They shape the world we live in. They make us fear every public space and guard our homes. They guard the patriarchal beliefs of our world with literal fists and guns and putdowns and hush campaigns and out of court settlements...and they use their power to make us all dance to their pipes.

They silence us through fear.

Here's how I see a lot of guys who don't understand the patriarchy and how it impacts on them end up living and thinking:

You don't tell anyone how terrified you are. You don't want the women in your life to know. They're so frequently looking to you for support and protection. When they start pressuring you to be more open minded and be more feminist, it scares the living crap out of you because your next thought is to those people - those people who would hurt the both of you if you dared be like a girl.

You'd rather break your fist on a wall than cry in front of the woman you love. It's ok for your girl to cry, because someplace in your head there's a little rulebook that says it's ok for girls to cry or show their fear. Because they are females. Nobody hits a crying girl unless they are really bad people, right? But boys...well that's another story. Everyone knows you'll get your ass kicked if you cry on the schoolground - unless you're a girl.

Girls get raised to expect this stoicism from you because their fathers were the same way. You fear they might disrespect you if you don't get this right. You feel that they expect that you'll just hold them like an archangel wrapping their wings around them whenever they weep - even if seeing them weep makes your chest constrict and burn and you need to bite the inside of your mouth not to start crying too.

You feel terrified of other men sometimes. A lot of them are really violent and aggressive. You worry about how you look to these nasty guys. They may bully you in school. They may harass you in the lunchroom. They may trashtalk you in the office. You're just as bloody scared of those guys that call women whores as women are - because some of them will beat you to a bloody pulp if they ever found you crying in the men's room. Sometimes you envy women the freedom to just cry like that without being in regular danger of assault. But you're a guy, not a girl. If you lose your job, or you're getting a demotion, or your mom is dying, or you just need to cry for whatever goddamn reason, there are a lot of places that are not safe for you to do so. The ones that are generally require you to be totally alone while you do. Because you’re not a girl.
You worry about seeming in control and strong. If you're strong, you can protect your home and your family. That matters to you. You're the watcher at the wall. When those scary bad guys come you need to be ready to do that dominance display - those bad guys respect that kind of thing. If you don't look strong to them they might just decide to take whatever they like. You need to look like you can take them on. You can't be a girl. But you believe as a man that that's your job to do, stoic and all alone. Because of sexism.

I think it's killing you.

For some people, being unable to express their emotions builds up dangerously. It becomes like a volcano full of hot lava that's just waiting to blow. It has nowhere to go, so it just gains pressure.

And you can start to feel angry. You begin to feel resentful. That little niggle of envy you feel when women cry starts to work around inside of you like a grain of sand in an oyster, hardening into a pearl of buckshot ready to explode.

You feel stretched thin. There's nowhere for you to go. So when a girl comes to you for something you are grumpy and irritable and rude. You might say something nasty or sarcastic. You might find yourself saying some pretty bad things over beers with the boys or in the gym showers. It feels good to get it off your chest because fuck knows you can't cry about it, can you?

If you grew up in an abusive home where you didn't learn how to handle anger well maybe your way of showing that is with your fists. If you're really messed up in the head enough by the violence that's to be had in this world you might just find yourself taking in a lot further than that. God help anyone who's nearby when you're drunk… and suddenly you ARE that guy everyone is terrified of.

You probably find yourself thinking "I sound just like my father/grandfather/uncle/that guy who sexually assaulted me on deployment/the bully from high school…"

You horrify yourself. You can't breathe and you can't cope....and at that point men tend to go one of two ways: They turn it inward or they turn it outward.

For those who turn it outward you see them trying to pretend there's no problem. It's just so much easier to live when you can pretend that's not how it is. It's not your fault...she was asking for it. She shouldn't have been there. She shouldn't have worn that dress. She shouldn't backtalk you. She should know her place. A man is the head of the home. All men are like this...

I'm not a monster. I'm not a monster. I'm not a monster.

These are the men we talk about most. The ones that everyone discusses.

I think there's quite a lot been said about the former.

But I think there’s a lot needs saying about the latter. About the kind that turns inward. The ones that quietly and peacefully drink themselves to death without ever raising a fist. The ones that lose themselves in World Of Warcraft and craft beer. The ones that silently slink away in the night and take a long walk off a short plank. The ones that stop living. The ones that go cold on us, and distant and unemotive.

I think those are by far in the majority. These men are ending their lives in shame and silence or living under a crushing burden of quiet despair. By acknowledging this fact instead of ignoring how pervasive and real the oppression of the patriarchy is FOR MEN, we can change the conversation. In the patriarchy there are no winners. There are only losers. It's not Them against Us. There's just us. "The point is not for women simply to take power out of men’s hands, since that wouldn’t change anything about the world. It’s a question precisely of destroying that notion of power." - Simone de Beauvoir