Why I’m Blunt

Or “Why I talk about my illness and disability so much and why I don’t talk about what my life would be like if I were well”.

I am very straightforward about being ill and how it affects me. I openly discuss diagnoses, symptoms and treatments with friends and I write about my illness a lot on here. Through the number of times my posts on chronic illness are being shared and the comments and commentary I see on and around my posts, I know that what I say here reflects the experiences of other chronically ill people. That recognition of shared experience feels important to me; we are a scattered community and many of us are alone or isolated in some way in offline life.

It’s in my offline life that I am sometimes accused of being “blunt” and I guess I am. Almost all of the time, I don’t pretend I’m okay when I’m not. I can hide a great deal of pain but I won’t deny it if I’m asked how I am. My stick (or wheeled walker) and my gait and other visible signs of disability I don’t hide. When people are getting to know me, one of the first things I make sure to tell them is that I have an incurable chronic pain and fatigue problem and that means I can’t really do x, y, z things and I might need some assistance with p, q, r things. I know I could just say “I can’t do this” and “I need some help with this” but it feels important to me to get the “incurable, lifelong pain and fatigue” said and understood. People don’t like hearing it and don’t know how to react and I can sympathise with that. But I need the people around me to have realistic expectations of what I can do and what my life is going to be like and getting “There’s no cure” and “I am in pain” heard and understood early on stops awkward conversations later on.

The other reason I’m so very blunt here and everywhere about how ill I am and how it’s incurable is, well… it’s a mental defense strategy. I *have to* be okay with being ill, I *have to* make myself comfortable with the knowledge that this is normal now – the alternative is spending my life grieving for a future that never happened, the life I could be living. It’s not that I don’t think about it sometimes, I do. It’s more that my mental energy is better directed at thinking up possible futures for myself *that I actually have half a chance of making happen*. There’s a lot that I can still do, a lot to work towards. I have no choice but to be okay with having all my plans and dreams from “before” fade into nothing and replaced with plans that centre what’s really important to me.

And so I’m blunt with others. To shut those “But what if you get better / if there is a cure / if you try this snake oil?” conversations down instantly. To practice being okay with the word “incurable”. To hand part of the discomfort our society has with illness and ill people to the other person to carry so I don’t have to deal with it.

To make myself into someone who accepts that his reality is real and okay, someone willing to work with what’s he’s got, someone grounded in the reality of his body with all its needs and capacities and limitations.

That’s why I don’t talk about what it would be like to be well. Imagining wellness for myself means imagine something my doctors have told me is virtually impossible. I don’t want to get emotionally invested in an idea of what my life could(n’t really) be because I don’t want to deal with the inevitable frustration and disappointment of never being able to achieve it.

I’m blunt because I’m honest. With myself and with you. Illness is my reality and it’s likely to be my future. I won’t sugar-coat that for any adult person. I’ll be honest and clear and my voice will not tremble or break when I say that this illness is life-long and disabling. I have to live with that. If you want to be part of my life in any way, you have to live with it too.

Addendum: above is entirely about my personal experiences, if you think it’s about you it maybe is but it’s also about dozens of other people. “There is no cure” is a sentence I have actually heard spoken to me by actual doctors, as are the words “incurable”, “chronic” and “progressive”. If you suggest I could “get better” you won’t be the first but you’ll still be wrong.

Religious Abuse

I’ve tried to write this post many,many times and I never manage it because there are parts of my past I still find too desperately painful to write about. But right now I’m seeing both atheists blaming Christianity (or more often “religion”) as a whole for the tragic and avoidable death of Leelah Alcorn and Christians insisting Leelah and others like her could be saved if they only found a different (but still Christian) church or community to be part of, that they ones they are in aren’t “real” Christians and real Christians will love and accept trans youth for who they are… And I need to say something.

I need to say something because I and other trans people, from children to old people and every age in between, have been subjected to religiously motivated abuse from people who “disagree” with our lived realities as trans people. I need to say something because responding to that abuse is NOT as simple as “find another Church” or “stop believing in God”. BOTH of those reactions – and others – can be good decisions for a particular person experiencing religiously-motivated abuse but neither is as easy or as likely to help as those suggesting them as a general solution appear to think.

To those suggesting to hurt and vulnerable people that they just stop going to church or find a different church or stop believing in God, I want you to know:

With very, very few exceptions, anyone who recognises that they are being harmed in the name of a religion is *already aware* that there are multiple branches of their religion. With even fewer exceptions, they are likely already aware that atheism/ agnosticism exists.

Telling someone to just leave an abusive community – whether or not you suggest an alternative community to leave to – is pretty much *exactly* like telling someone to leave an abusive relationship or family. The person in the abusive situation likely knows better than you what harmful consequences would occur if they tried to leave and what they would need to have in place in order to leave – if you’re not offering practical and *unconditional* support to leave saying “There are other options” is close to useless.

Going to reiterate that on UNCONDITIONAL support. If you only plan on being there for someone *after* they take the leap out of an abusive religious community and not while they are still in it and trying to figure out what to do, your support is not really support. Same goes if you only intend to support someone if they make the choice *you* think is best – that’s not support, it’s paternalism. If you want to help people in these kinds of situations, you have to show that you care about them no matter what and you trust them to try their best to do what’s best for them.

Religion often isn’t “just” a belief system – it can be a huge part of a person’s life and identity. It can be their main or only community and family. Leaving one particular Church could potentially mean never seeing almost all your friends and family again – it’s not up to you to decide whether or not that risk is “worth it” for someone else.

You can’t look at a person and see how strongly they feel about their religion or what it means to them or what parts are and aren’t important to them. Telling a Catholic that Unitarians exist and welcome LGBT people is not helpful if the Trinity is spiritually meaningful to that Catholic. Telling an agnostic Jew to give up Jewish rituals that are important to her because her family refuses to accept her gender wouldn’t be helpful either.

Don’t argue scripture with people uninvited. THIS IS IMPORTANT. Don’t argue about scriptural interpretation or different ways of looking at certain passages or practices without explicit consent to do so. More likely than not, they are getting plenty enough of this within their community / family. Make sure they know that YOU will respect their boundaries and won’t try to force them into discussion.

To those who find themselves experiencing a conflict between who they are and what their religious community teaches, I want you to know:

 

First, you’re not alone. Lots of people all over the world, of many different faiths (and occasionally atheists brought up within the moral codes of a religion) are in the same position as you. It’s difficult and there are tough choices to be made but whatever you choose, someone else is doing the same – and maybe with the help of the internet you can find them.

Second: it’s okay if you don’t want to call what’s happening to you “abuse” – and it’s okay if you do want to. Trying to rationalise what’s happening to you by telling yourself that people are just trying to help you or that they don’t know that what they’re doing / saying is harmful is okay too. If it helps you survive, think and feel anything about the people hurting you – they can’t control what you think or feel even if they want to.

The position you are in – seemingly forced to make a choice between your*self* and your religion – is an extremely difficult and complex situation to be in. It’s unfair and it’s wrong and it’s NOT your fault this is happening to you. Anything you can do to keep your self safe and alive is an okay response to this situation.

Staying closeted or going back into the closet can hurt you but as a short to medium term response it can be a good choice.
Being out only with or around particular people and not in general or in specific places can be a good choice.
Keeping your own beliefs in your head and performing the religious practices of the community you are in until you can safely get out can be a good choice.
Losing your belief in God or changing religion can be very scary – it can also be the right thing for you to do.
Finding a way to stay in your religion and still be open about who you are is also likely an option. It might be the best option for you. It also might not.
Leaving and then going back is okay. Leaving and never going back is okay. Drifting in and out of belief in God is okay.
Griefing over losing a religion or belief in God is okay. Not feeling grief at all is okay.
Staying and trying to change things is okay. Burning bridges is also okay.
Wishing you could go back is okay. Being glad to never go back is okay.
There is NO one right way to deal with this.

You are going to need friends. Friends within *and* outside of your religion. Look for groups for people of your religion who are trans / LGBT, look for groups for people who *used to* belong to your religion but left. Make friends that have nothing to do with your religion. Make friends outside of your community so you know that if you do decide to leave, you won’t lose all your friends.

Find someone to talk to about your feelings. Get an outsider viewpoint if you can. Find someone sympathetic who won’t push their own solutions on you – a helpline for people in distress might be a good place to start.

If you are a child / teen, remember that you soon won’t be and you’ll be able to choose your own place to live, study, worship and your own therapists and support when you’re an adult. If your parents or school *aren’t* religious / are supportive of trans and LGB people, they might be able to help you find a supportive adult to listen to you now.

Talk scripture if you want to, don’t if you don’t. I can happily discuss why Judaism is a good religion for me but I still feel terrified and ashamed if people try to discuss Christian responses to trans and LGB issues with me because of stuff that happened to me when I thought I was Christian. You don’t owe ANYONE an explanation of why you do or don’t attend certain services or do or don’t believe certain things.

And finally:
Whatever you feel about and however you experience your gender and/or sexuality is real. Nothing and nobody can take it from you. I and thousands like me will believe you instantly and completely if you say “I am trans” or “I am a woman” or “I have no gender”. No one else can tell you how you feel about yourself, only you know and only you can say. Nobody can make you become someone you aren’t – not even you. Whether it will be easy or difficult for you to find a way to live as your self, there are thousands of us who want to help and support you to do it – whatever you think and feel about God or religion and whether you want to stay in a particular faith or not.

You deserve to be happy and to live your life authentically. Yes, you.

Ten things they don’t tell you about life with chronic physical and mental illnesses

I live with physical illnesses that cause chronic (ie long term) pain and fatigue. I also have several mental illnesses, including depression, anxiety and post-traumatic stress disorder. For all of my adult life, I’ve been regularly seeing doctors and counsellors and therapists and physios and nurses and social workers… all of them somewhat aware of my long lists of diagnoses and treatments. Here’s the important stuff that none of thought to tell me:

1. Becoming physically ill from a mental illness or mentally ill from a physical illness is really, really common.

PTSD can cause chronic pain. Chronic pain can cause or further exacerbate depression. Depression usually comes with anxiety. Chronic fatigue and pain are common symptoms of depression… Basically, human brains and bodies are complex systems and disruption in the functioning of one part will often have repercussions elsewhere. I am not, as I’d feared, somehow especially weak and unable to cope with one illness without developing more – I’m experiencing something fairly typical for people who live through certain kinds of trauma.

2. The brain is a part of the body and mental illness can be whole body illnesses. Likewise, whole body chronic illnesses like fibromyalgia and ME can and do affect the brain and so the mind

While medical professionals talk of me having several different illnesses (with overlapping symptoms) it often makes more sense to think of my mind and body as experiencing one great big illness that sometimes needs tackling at the level of its component parts and sometimes needs to be treated as a whole. Sometimes fatigue and pain and despair need to be tackled as just that, without worrying too much which part of my illness is causing them right now.

3. Being chronically ill, mentally or physically or both, makes it really, really difficult to tell when you’re acutely ill and need to see a doctor
When you wake up feeling like you have the flu every day it gets kinda hard to tell when you actually have got the flu. When nausea, weight gain and a tremor are all symptoms of your illnesses and possible side effects of your medication, it’s easy to ignore them when you should maybe get them checked out (I eventually did, got more pills for the nausea, some disapproving looks about the weight gain and a diagnosis of “benign essential tremor” for the shaking).

4. There is no surefire way to determine whether you’re actually really tired from fatigue or demotivated from depression

The only way to find out is to try to do something, if it hurts and you get post-exertion malaise, it was probably fatigue

5. Depression and anxiety can physically hurt; fibromyalgia and ME can make you cry with fear, pain, despair or anger

6. You cannot deal with only one illness at once, even if that’s how doctors, the dwp, your family and, well, everyone else, seems to think you should deal with it

PTSD flashbacks can steal lots of energy. So can strong emotions from depression and anxiety. Panic attacks can hurt and make your fibromyalgia flare up unexpectedly. Depression will use your new slower, sleepier pace of life against you to call you lazy or insist that other people are talking about it behind your back. Self-harm becomes easier than ever when your body feels pain at every touch and missing a dose of painkillers can guarantee agony. My body and mind are experiencing massive malfunction and problems in one area cause problems elsewhere. Most of my treatments are just fire-fighting as problems spring up everywhere.

7. People will try to tell you you’re just mentally ill or that you’re not mentally ill
Both assertions are unhelpful and reductive. You are ill, both your body and your mind are affected. It’s not your fault but you can’t treat just the body or just the mind and expect the problems to all go away.
8. The illness(es) you’re experiencing is not your fault
No one has ever said this to me and I’ve often wished they would. I didn’t do anything to deserve this – and if you’re ill too, you didn’t either.

9. “Incurable” doesn’t mean “It will always be exactly as bad as it is right now”

I really, really wish someone had explained this to me and I hope you remember it. There’s a huge, huge space between “how bad it is right now” and “how well people generally feel”. Incurable just means you will never get (back) to “well”. You can and will live in the space in-between. You can feel better, you’ll just never be well. I know that still sounds really difficult and scary but it’s more survivable than “I will feel this awful forever”. Mental illnesses like to extrapolate futures full of acute awfulness and I am telling you that’s not quite how it is.

10. A surprisingly large amount of pain and suffering is survivable and can become a “new normal

I know this doesn’t sound like much of a positive but bear with me. As well as medicating my symptoms, which lessens my pain / fatigue / anxiety / panic / despair / involuntary thoughts but never stops them entirely, i have found that as the years go by, previously unendurable symptoms start to seem like normality: like how music and chatter in a shop can fade to background noise. With no real choice but to get used to pain, fatigue and involuntary thoughts, I have settled into accepting levels of all three that would previously have brought be to tears.

 

And one extra:

11. It IS really and truly possible to be happy *and* ill.

I am happy. I love myself, I love my friends and family and, yes, I love my life. I can’t always keep ahold of the knowledge that there is more to my life than pain and fear and fatigue and despair, but I often can and then I am happy. It is possible. I wish someone had told me that. It’s possible to be okay- and more – whilst living with multiple illness, physical and mental.

To my fellow men with love

This post has been a long time coming. I was working on it in my head for weeks before some guy decided to go on a killing spree because “hot girls” didn’t fancy him. In the wake of that, it didn’t feel appropriate to publish a post like this, not while people were still mourning, not while every woman I know was feeling terrified that any of the men in their lives might secretly think like that guy… women were hurting and their needs ultimately came first. Yet the aftermath of that tragedy showed me that this post had to be written, that men and boys had to be presented with another, better, truer view of the women and girls in their lives. The post below draws on stuff that I already tweeted about on the #AllMenCan hashtag and it’s stuff that men and boys need to hear.

So, here it is. From man to man, I want to teach you some things that you maybe already know or half-know or maybe never learned before at all. If you didn’t already know this stuff, that’s not your fault but it doesn’t mean you’re excused from learning it now. Every man, whether heterosexual, gay, bi, queer or asexual, cis or trans, young or old, needs to learn these things and practice them until they are as natural to him as breathing.
Why? Because every single one of us knows at least one woman or girl and every woman and girl deserves to be surrounded by people who treat her with respect and dignity. Why? Because all people deserve to be treated with respect and dignity and it seems that men, as a group, have been taught that we don’t have to respect women. We can and must change this for the better – not just for the women and girls in our lives but also for ourselves.

Here are the lessons you need to learn:

1. Women are people.

Not only if you find them attractive or only if you find them unattractive. Each and every woman you meet in your life is an individual with her own desires and her own goals and her own life. This likely doesn’t surprise you but I want you to really, really keep it in mind whenever you interact with a woman – from the barista to the cute woman on the bus to your girlfriend to your mother. Every woman is unique and has her own independent life going on. The extent to which her life is going to involve *you* cannot be decided by you alone, only by you and her together.

2. Women are all unique and different from each other.
Because women are all different and unique, anyone trying to teach you tricks or skills for interacting with women (particularly for dating women or initiating sexual relationships with women) is selling you snake oil. To be blunt, they either don’t know what they are talking about or they know they’re telling you bullshit and are hoping to gain something by getting you to fall for it. Treat ANY dating advice that claims to work on all or most people of one gender only with extreme SUSPICION. While there are some very general skills for interacting with *people* you can learn, skills that are gender-specific and dating-specific are few and far between. If you think you may need help (and indeed even if you don’t think you do) I recommend Dr Nerdlove, Captain Awkward and Real Social Skills as good places to start looking.

3. Sometimes women don’t fancy you and you’ve got to be okay with that
If a woman (or any other person) doesn’t like you or isn’t interested in you in the way you’d like her to be, there is likely nothing you can do to change that and you shouldn’t try. I know this is hard to hear but it has to be said. No matter how much you like her, she doesn’t have to like you back or date you or give you “a chance”. You remember how she’s got her own independent life and goals? If she doesn’t want to spend time with you, she doesn’t have to. If you’ve ever been assigned a “friend” by a parent or teacher who you didn’t actually like, you’ll see why. Hanging out with someone you don’t want to hang out with is no fun – can you imagine dating someone you don’t like? That doesn’t sound fun either and if you insist someone give you “a chance” that’s what you’re asking them to do.

4. Nobody owes you.

Friendship, love, romance, sex, dates and social time are all great and I hope you experience lots of these throughout your life. However, nobody owes you them. You can ask people if they’d like to share them with you but you can’t demand them from anyone or take them without asking. These things can only really exist if everyone involved wants to be there, with those people, sharing that experience, at that time. It’s mutual and consensual and that means that it stops the second someone involved wants it to stop – even if you’d rather continue. This applies to every person you ever meet, whatever their gender or relationship to you. And it applies to you too! If you’re not feeling it any more, sex or a date or a friendship or a relationship can stop. You don’t owe it to anyone to continue and they don’t owe that to you either.

5. “No” means “No” not “I secretly hate you” or “You are objectively undateable”
This one follows one from lesson 4. Remember how you can ask people to share experiences with you (like a date or a friendship or a sex act or even to get married) but not *demand* those things? The difference between asking and demanding is that you have to be able to hear and accept a “No”.
A “No” to, say, “Would you like to go on a date with me?” can be upsetting to hear and it’s okay to be upset. The slightly more difficult lesson to learn here is not to read loads of things into that “No” that aren’t there. If someone doesn’t want to go on a date with you, that means she doesn’t want to date you. It does NOT mean that she also secretly hates you or she thinks you’re ugly or undateable. If she later says “Yes” to an offer of a date from another man, that doesn’t mean she thinks he’s better than you objectively, just that *right now* she individually is interested in going on a date with him. As a unique person with her own tastes and her own life, she gets to make her own choices – even if you don’t like those choices or can’t understand them. She is not a stand-in for “all women” so her not wanting to date you tells you absolutely nothing about whether *other* women might want to date you.

6. “No” means “No” not “Talk me into it”

If you ask for something from someone or offer someone something and they say “No”, respect that. No matter what your genders or your relationship or their age. You cannot argue someone into wanting something they don’t want and it’s inappropriate to abusive to try. If someone doesn’t want to come to your houseparty, accept that. If someone doesn’t reply to your message on a dating site or replies saying she doesn’t want to talk to you, accept that. Read Captain Awkward’s Guide To Dating for more on this. Where this links with the previous lesson is so important I’m going to make it into its own lesson.

7. YOU CANNOT PERSUADE SOMEONE INTO BEING ATTRACTED TO YOU.

Sorry for the allcaps but this is important. Attraction, whether romantic or sexual or both, is a feeling. Feelings are not things you can talk someone into or out of. Trying to persuade someone to feel a certain way about you or to persuade someone that you know how they feel about you better than they do is wrong and abusive. I can see why it’s tempting (like, I am gorgeous and awesome so why wouldn’t people be attracted to me?… because they are individuals with their own separate independent thoughts and feelings that’s why) but please never do this. And if anyone ever tries to do it to you and you notice it, please run. Either they are a bit clueless and going to learn the hard way that you can’t make people feel things they don’t feel or they don’t have your interests at heart. Please don’t wait around trying to work out whether they’re clueless or harmful – you don’t owe them a second of your time either way.
If you’re inclined to believe that feelings are things that people can be argued into and out of, please read these three links on Geek Social Fallacies for more information on difficult situations this mistaken idea can cause and ways out of them.

8. Being single and/or not having partnered sex for some time won’t hurt you
There is nothing wrong with being single, even if you’d prefer not to be. It doesn’t really say anything about you as a person or reflect on you. If your friends are taking the piss about you being single, tell them to knock it off and even get new friends if they don’t. The world doesn’t owe you a partner and no particular person owes it to you to become (or indeed, remain) your partner. Being someone’s partner is a wonderful experience to share with someone – doing so out of a sense of obligation is awful for all involved.
Being a virgin or having been without partnered sex for any length of time is not a bad thing. It doesn’t mean you’re not attractive or that no one will ever want to have sex with you – all it means is that the people you’ve asked have said no and you’ve said no to any people who’ve asked you. If you haven’t *asked* anyone if they’d like to have sex with you, that is probably part of the reason it isn’t happening. Remember that everyone (including any women!) who you ask could say “No” and you have to respect that and not argue. You’re going to hear a lot of “no”s. We all do. Remember that “No” isn’t an indication of how attractive or manly or awesome or whatever *you* are, it’s about the other persons feelings, desires and choices not lining up with yours right now.

9. Women are not all the same. Neither are men.

We’ve all heard sentences that start with “Women like…” “Women don’t like…” “Women want…” but beyond “respectful, equal treatment as a human being with her own interests capable of making her own choices” there is *absolutely nothing* that all women want. There’s a lot of people very invested in getting you to believe that women want things like flowers and teddy bears and diamond engagement rings.. and some women do want those things! And some women don’t want those things and they aren’t being a woman “incorrectly”. There are as many different ways of being a woman as there are women. So, if you’re a friend, boyfriend, husband, son, brother or colleague of a woman, you’ve got to learn to recognise that she is not just “a woman” she is one particular woman with her own likes, dislikes, goals and desires that may or may not be similar to those of other women you meet. How will you find out what she likes, dislikes, wants etc? The only way is to ask her. Ask her and take her words at face value even (especially) if they aren’t what you expected or wanted to hear. This applies equally to other men – don’t assume, ask and then accept and respect the answer.

10. Set an example to other men and teach any boys you know

Whether these lessons are new to you or just a refresher of stuff you already know, just knowing this stuff isn’t enough. You have to practise it in real life, treat every woman (and man, and nonbinary person and child) you come across as a unique person with goals capable of making her own choices. You have to ask people for things you want and be able to hear and accept “No” as the answer. You have to ask the people you know what they want and like and accept their answers even if they go against gendered norms. If other men try to tell you that women owe you “a chance”, tell them why no woman owes any man any such thing. If they try to tell you “tricks” to “making” women like you or insist that “women don’t know what they want”, tell them they are wrong. It may not be their fault if they were never taught this but all men (and people of other genders but primarily men) need to learn how to treat everyone with respect and dignity. Teach your sons and nephews and cousins and godsons and students that girls are not strange alien creatures totally different from boys, but just as much people as they are. Teach them to ask for things and to accept and respect “No”. Teach them now so they can teach the next generation of boys when they are men.

We didn’t ask to be born men in a patriarchy. We didn’t ask to become so alienated from women as to need reminding that they too, are people. We can change things now so the men of the future will never so much as question the humanity and equality of women.

The world can be freed from patriarchy, piece by piece and you and I and every man and boy we know can help by learning to treat women as our equals from today.