How Christians Can Respond to the Chronically Ill

One of my favourite stories in the Bible, probably for obvious reasons, is when the woman with chronic menstrual issues pushes through a throng of people surrounding Jesus, saying to herself, “if I can just touch the hem of his cloak, I’ll be healed.” She was desperate for healing, which resonates with me deeply. She was also incredibly brave – as she couldn’t stop menstruating, she was ritually unclean and was forbidden from mingling with society, let alone touching a rabbi. So she was also socially isolated and, I suspect, depressed and taking quite the hit to her self-esteem. Uniquely (to my admittedly less-than-professional biblical knowledge), she doesn’t ask Jesus for healing. She touches him, filled with unshakeable faith, and his power flows out of him and heals her. Her courage and faith heal her. It’s a story that thrills and inspires me, because I can so strongly imagine what she felt, and I can aspire to have her conviction.

What I mean to say with my long-winded introduction is that the Bible, and Jesus (who commends the woman) have a place for the chronically ill and the beaten down. Unfortunately, sometimes the church doesn’t. It almost always comes from a place of goodwill, but it still hurts when they get it wrong.  I’ve been mostly lucky in my church – things that have hurt me have been things said by well-meaning people in general conversation, rather than directed to me, but I draw from the experience of many people in writing this, and they have all been wounded by it. That’s why I want to talk about how churches and Christians in general can be more welcoming to the chronically ill.  Below I offer three don’ts and three dos as to how Christians can achieve that goal.

1) Don’t resort to platitudes

This is a good tip for anyone when responding to the chronically ill (or anyone enduring any sort of suffering, from anxiety to grief), but I think Christians are the worst at it because we have an entire book of handy phrases neatly packaged up in the form of the Bible.  Many of those verses are great, but they all have a time and a context, and usually they aren’t appropriate to say to us.  Here’s some examples that I don’t think are helpful:-

  • Verses about God’s ways being higher than our ways so we can’t know the meaning of things;
  • Verses about there being a time and a season;
  • Verses about God’s healing;
  • Verses about how suffering is to teach lessons.

There are probably others, but those are the main culprits.  The reasons that these aren’t helpful is that we know God’s ways are higher than our ways.  Telling us that is not comforting.  I adore the poetry of Ecclesiastes,  but telling us that there is a time and a season is not helpful to the chronically ill because our whole lives are going to be the time and the season.  We know the verses about God’s healing, but the healing itself is not being shared with us right now.  Finally, the idea that we might learn something from our intense pain does nothing to counteract the, you know, intense pain.  It would have to be a truly mind-blowing lesson to be anything close to worth it.

2) Don’t tell us that we are Christianing wrong 

Some Christians take the view that either:-

  • We sick because we sinned; or
  • We aren’t getting better because we aren’t praying hard enough.

Wrong.  Wrong and unbiblical.  Just as we aren’t matyrs who suffer to learn great spiritual truth, we’re also no worse than anyone else.  We all sin.  We don’t all have chronic illnesses.  Job was one of the most righteous men in the bible, and he lost his home, his family, his wealth, his friends, and his health in two devastating attacks.  In John 9, Jesus specifically said that the man born blind was not blind because of any sin he or his family had committed.  Bad things happen to good people and vice versa.  We are not cursed or unclean or any more sinful than you.  We’re just sick.

Likewise, God doesn’t necessarily hand out a free healing to those who get enough stamps on their loyalty prayer card.  Paul writes in 2 Corinthians 12 that he begged the Lord to heal “the thorn in his flesh,” and the Lord refused.  Is anyone honestly going to suggest it was because Paul, possibly the most influential Christian in history, lacked faith?  Sometimes – often – God doesn’t heal.  I don’t know why, but I do know that it isn’t the fault of the person begging for healing.

Saying these kind of things isn’t just unhelpful and inaccurate, it’s damaging.  If people believe you when you say this, they are going to feel inadequate, rejected by the church and by God, and you will deal a horrible blow to their faith.  Stop it.

3) Don’t publicly pray for us unless we request it, or force us into group prayer sessions

It is nice to be remembered in people’s prayers, but please don’t pray for us in the congregational prayer without at least checking with us that it’s ok.  Some people aren’t “out” about their chronic illness.  Some people just don’t want to be the centre of attention, or have unnecessary attention drawn to their illness.  It can lead to embarrassing and intrusive questions at the end of the service that we may not want to field.

Likewise, being drawn into a group prayer session, or even a one-on-one prayer for healing can be embarrassing.  It creates this expectation of healing, and if it doesn’t work, you run the risk of people doing something from point 2.  If the sick person is fine with it, go for it, but please make sure that they are actually fine with it and don’t feel pressured into it.  If they say no, or seem uneasy, please drop it and ask if you can just pray for them on your own.

4) Do make church accessible (not just for the chronically ill)

Have an ambulant toilet (near the other toilets, not down a corridor, through an office and behind a locked door that you need an elder to open).  Have spaces for wheelchairs.  Have nice cushy seats for people with pain.  Have braille on the toilet door.  See if a church member speaks Auslan and is willing to interpret, or project the points the pastor is making onto a screen.  Make your church camps, getaways, meetups and breakfasts at times and locations that sick people can attend.

For me, the biggest thing is good seats.  I cannot sit on the usual school chairs and benches most churches provide without a lot of pain after a very short time.  Having some comfier chairs at the back of the church – not out in the foyer so I have to watch through the doors! – can make the difference between me being able to go to church and not.

5) Do offer practical assistance

It’s all well and good to pray for someone.  Indeed, God commands it.  He also praises people engaging in practical acts of service.  Perhaps you could cook them a couple of freezer meals, or ask if they need any help around the house, or check if they need a lift to and from church on Sundays.  Those are all small things that could make a huge difference.  Just don’t make a big deal out of it – treat your sick fellows like everyone else in the church.  We should all be serving each other in whatever way we can.

6) Do represent the sick and disabled

Whether by having sick/disabled people on the ministry team or praising them for their courage and strength in sermons, represent us in the church.  Don’t glorify us or turn us into inspiration porn, but preach on that woman with the menstruation problems.  Preach on the lepers and the blind.  Show that Jesus loved the sick and disabled too, and show that we are people, not just parables.  Keep us human, and keep us involved.

 

That’s my list of quick tips for the inclusive Christian.  Do you agree with these points?  What do you wish your church would do to make it a more inclusive space?  What good things is it already doing?  Do any of my readers from other religions or groups have similar experiences?  Let me know in the comments.

Endometriosis Education in Schools

I am one of those people who think that schools should be a place that you learn more than just the reading, riting and rithmatic.  I think schools should teach a few life skills as well.

I know it isn’t a popular view, and the counter-argument tends to be that parents should be teaching these skills.  I agree, parents should be.  But if there is one thing my work has taught me, it’s that they don’t.  Some lack the time, some lack the skills, and some simply lack the inclination or ability to have their life together.  Should the burden fall on the education system to make up the gap?  No, but where else will it fall?  If it doesn’t land on someone, our children are going to keep being failed, and it isn’t their fault.

I’m not suggesting that teachers should suddenly be interrupting maths to take their students through the basics of tax returns and changing flat tyres, of course, a la To Sir With Love (but look at what a difference he made!).  It is something that needs additional funding and additional teachers.

Where am I going with all of this?  Well, I want to talk about why and how I think endometriosis should be discussed in schools.

Most schools do some form of sex ed anyway.  In my years at school I experienced a number of different styles.  In Year 6 we watched a video of a woman giving birth, with a close-up of the baby crowning.  That was traumatising as a 10-year-old, let me tell you.  In Year 8 we got some vague talk about periods.  In Year 10 we got yelled at by a right-wing American lady whose catchphrase was “Keep your pants on!” In Year 12 we were treated to a run-down of all the common STIs you could get, with obscenely graphic photos.  All in all, sex ed was a mixed bag and left a lot of questions unanswered.  Certainly, none of them taught me much of use, such as the value of consent or the importance of peeing after intercourse.

All in all, sex ed in Australia is a bit of a shambles, particularly in religious schools.  Don’t get me wrong, I loved my Christian schools – great teachers, great friends, great courses – but the sex ed was, well….

Image result for if you have sex you will die

Anyway.

I’m not opposed to promoting abstinence.  It’s 100% the most effective way not to get an STD or fall pregnant.  It’s well documented, though, that abstinence-only education does not actually help students or reduce rates of teen pregnancy.  I would really love to see a sex ed course that discusses the value of abstinence but also acknowledges that not everyone will remain abstinent, and give them the information they will need if they don’t.  I’d like it to cover the sciencey side of things (anatomy, periods, puberty, fertilisation, pregnancy etc), the emotional side of things (hormones, temptation, relationships, consent, domestic violence, red flags), and the basics of common diseases.  By common diseases, I don’t just mean STDs.  I learned a lot about HIV during sex ed, and that’s important, but roughly 25,000 people in Australia were HIV+ at the end of 2015.  The numbers for endometriosis are more like 1 million, but we never heard a word on it.

If students were educated on endometriosis, I think we’d see a lot fewer teenagers labouring through horrific period pain thinking that they are just weaklings who can’t handle a few cramps.  I think we’d see teenagers who’d know that maybe something wasn’t quite right and seeking referrals to specialists much earlier, which would hopefully help end the current massive gap between the onset of symptoms and diagnosis.  Early treatment would hopefully help reduce the impact of the pain on young people’s schooling by reducing absences and increasing their ability to participate in school life.

Moreover, if school staff and administration knew more about endometriosis, there might be fewer deeply unsympathetic attitudes from teachers and school nurses.  Students with periods may be allowed easier access to controlled dosages of panadol and ibuprofen from the school nurse, more frequent bathroom breaks, or little things that would make their attendance as class easier, such as a heat pack or a cushion for their chair.  They might be less likely to be dismissed as drama queens, attention-seeking, weak, not trying hard enough, or deliberately trying to get out of school activities.  Even basic education on the fact that periods can be totally erratic and unpredictable in when they arrive or can have terrifyingly heavy flows may assist some educators in changing their attitudes towards students who are struggling.

It would also contribute to reducing the stigma around periods that sees teenagers sneaking to bathrooms with tampons tucked up their sleeves like the very sight will be toxic to young men.  High school can be a seriously messed-up place and one part of that is the bizarre attitudes of high-schoolers towards all things “feminine”.  If you aren’t girly enough, you aren’t desirable to the boys, and goodness knows that’s what’s important, but if you are too girly you aren’t cool and one-of-the-guys so you don’t get their approval that way either.  Either way, you don’t discuss periods because that’s girl stuff (ew) and boys shouldn’t have to hear about that.  There are some wonderful young men who are exceptions to this and will carry supplies in their bags in case friends start their period, but they are all too often shouted down by highschool groupthink (peer pressure is actually incredibly effective, by the way).  Normalisation of periods, let alone more education about the crippling pain that can accompany them, would go such a long way to making the whole high-school-whilst-bleeding experience easier.

One piece of good news is that Australia’s Endometriosis Action Plan does include more education at school level on endometriosis, particularly in rural, regional, remote and indigenous communities.  These are places that, even more so than everywhere else, really suffer from a lack of proper medical care and education.  I live in a city with two hospitals within a half-hour drive of my house and I sometimes struggle to get appropriate treatment.  Imagine if you live in a small community with one GP (particularly an older male one who is dismissive of endo and period pain) and the nearest hospital, specialist or second opinion is hundreds of kilometres away.  I had to drive all over town to try and get hold of my Zoladex.  People in remote regions may have to travel for hours and still need it to be shipped in from another location.  I’m really glad to see the government planning for change in the provision of healthcare and education.

Do you feel that endometriosis should be discussed in schools?  Should it be part of an expanded sex-ed curriculum, a discreet topic or presentation, or should it come in somewhere else, such as a biology lesson?  What do you think of the Action Plan?  Let me know in the comments.

 

Talking to Children About Your Endo

TW: childbirth, breastfeeding

I need to preface this by saying that I’m not a mother.  What I write hear is based on listening to what mothers say, on having worked in childcare for more than five years, and from having been a child at some point.  I would really welcome comments from mothers in the comments, particularly those who have had to have this exact conversation.

The pressure on mothers is already immense, particularly with the increasing popularity of the internet as a way to give and receive advice, and, sadly, criticism and judgement.  Google “Mommy Wars” and you’ll get endless tales of women being criticised for doing literally anything with their child.  Mothers simply cannot win.  Imagine how much harder it is when you have a chronic illness.

Pregnancy is often touted as a cure to endometriosis.  It isn’t.  It can cause a temporary relief from pain as the body is flooded with hormones that shut down the endo growth, a state that often persists through breastfeeding.  However, far too many women report than their endo comes back as bad or worse after finishing breastfeeding.  Raising a child is, I’m told (and can readily believe) is a very difficult task, and often intensely physical.  Imagine doing that whilst dealing with chronic pain on a daily basis.

If you can’t sit through a movie, how can you sit through a school play?   If you can’t stand up long enough to cook for yourself, how can you cook for your children?  If you can’t stand, how can you carry your child around, or play active games with them?  When you already can’t sleep for pain, how do you drag yourself out of bed to deal with your crying baby?  For too many people, that struggle is a reality.  Unfortunately, a child will eventually figure out that most mothers aren’t like that.  Their friends’ parents run around with them on the weekend, but their parent needs to lie down all Saturday to recover from the week.  Their parent isn’t normal.  So, how do you talk to them about it?

Tell the truth

My advice?  Children are often more intelligent than we give them credit for and there is no point lying to them.  It’s difficult enough for childless me to maintain a facade of normality half the time, and I don’t have to do it around a small human who is attached and attuned to me.  It’s exhausting.  Parenting is difficult enough.  Yes, you will always do what you can to be as “normal” as possible for your child and give them the kind of parental interactions most children will have.  However, you will crack and you will need time to just be sick, so accept that and accept that your child will notice.  Be straight up and explain it to them.

Now, I’m not suggesting you give your 5-year-old a detailed description of exactly what the reproductive system looks like and how endometriosis affects it.  Obviously you’d make your explanation age-appropriate.  A two-year-old won’t need one.  A five-year-old might need to be told, “I have a disease called endometriosis, and sometimes that means I won’t be able to do all the things I want to do with you because I’ll need to lie down and recover.”  A thirteen-year-old, on the other hand, is probably old enough to get a more fulsome explanation about the uterus and what’s going on in there.  They’ll probably have questions.  In my view, it’s better to answer them so you know they aren’t getting some wacky information from their friends who will confidently tell them that you have massive tumours floating around in your pelvis, or something like that.

It’s also worth telling them to expect changes.  If you are starting new medication or having surgery, let them know that you may be incredibly tired for a week or two, will need recovery time post-op, or might have an unusually short temper for a while.

Tell them what you need

Children do tend to be selfish creatures.  Little ones won’t have fully developed the skill of empathy much, and that’s ok.  Consequently, though, they’ll want to know how this will effect them.  One cool thing about children, though, is they love tasks that make them feel important.  Older children, on the other hand, will feel empathy and will want to do what they can to help.  Either way, give them some age-appropriate tasks.

Five-year-olds probably can’t cook you dinner, but they can make sure that their toys are away so you don’t need to tidy up after them.  A teen might be able to take on dinner a couple of nights a week, though, and help out with other household chores such as stacking the dishwasher or folding the laundry.  Getting children involved with these tasks will take a big load off you and teach them valuable skills (and I say this from the perspective of a very spoilt child who had very few chores).

Tell them exactly how helpful this will be, and reward them with praise for helping you out.  Young children will be delighted to know that they are your special helper.  With multiple children, rotating chores will help prevent them becoming super bored and half-arsing the whole thing (for a little while, at least).  Children are also a fairly competitive bunch, so encouraging them to see who can be the best may be an effective tactic (although potentially teaches placing an unhealthy emphasis on coming first).  Monetary incentives or other treats are at your discretion.

Tell them how you can help

As I’ve said many times before, endometriosis effects every sufferer uniquely, and our capabilities all differ.  It can be helpful to tell your child the things they can rely on you to do.  For instance, will you be able to help with their homework if they come and sit on the couch with you so you can lean back?  Can you commit to the school run most of the time?  Can you do a batch lot of cooking on the weekend so all you need to do is defrost dinner for the night, so there’s always something for them to eat?  Whatever you can do, let them know.  It might change on a daily or weekly basis, and that’s fine.

Tell them it isn’t their fault

If you are on medications that affect your hormones and make you liable to tears or being cranky, tell them that it isn’t you and it isn’t them, it’s your medications.  They will probably need a whole bunch of reassurance about that if you start snapping over really minor things (obviously, do your utmost not to do that).  Parents being upset can have a massive impact on children.

One thing that they might not need to know too early on is if childbirth made the condition worse.  If you do tell them, let them know that they are worth every second of it and you don’t blame them or wish they hadn’t been born to spare you.  Remind them how beloved and precious they are, and that the fact that you can’t always play with them as much as you’d like is not relative to how much you love them.

 

Everyone will have their own approach, and what I have said here may not be how you choose to tell your child about your endo.  I’d love to hear about your alternatives in the comments below, and why you would or have chosen your way.

Staying Generous

Yesterday I wrote about how to stay grateful in a situation where there is so much against us.  Today I want to talk about how we can stay generous when we are already lacking in money, struggling physically, and devoting most of our emotional energy to caring for ourselves.

Most forms of generosity involve giving your money, your time, or your emotional labour.  Donating to charity, helping friends move house or listening to people discuss their problems are all common forms of generosity.  Being generous is something that feels good, makes people like you and is just a nice thing to be.  However, it can also be seriously draining.  So, what are some things that people with endo can do?  Here’s a few ideas…

  1. Engage in online advocacy, including sharing and signing petitions.  It generally only takes a few clicks so it isn’t a huge amount of energy required, but it helps promote good causes.
  2. If you have the spare cash, invest in a charity that helps you help a lot of people for a small amount, like Kiva.  You can lend a certain amount of money to a cause of your choice.  The person you loan it to then pays it back over time, so you can reinvest it in a new cause.  It’s not a commitment to a monthly scheme and it means you only have to give the money you have, which you will get back.
  3. Participate in fundraisers that don’t require too much from you.  Many fundraisers involve sponsored walks, runs or cycles.  Others, like Frocktober (to raise money for ovarian cancer research) or Dressember (to raise funds to combat human trafficking) simply require you to wear a dress each day.  I managed Frocktober last year and raised around $700, which I couldn’t have done if I was required to, say, walk for an hour a day.  I won’t be able to do it this year as I’ll be in the UK and I want to wear pants to travel, so I might give Dressember a go instead.
  4. Practice being generous with the people closest to you.  Maybe you can’t afford to take your partner for a romantic date, but can you offer a back massage or a foot rub?  If your best friend is struggling at work, listen to them and talk to them.  Be their shoulder to cry on.  It’s easier to expend emotional energy when you care about the person you are doing it for.  If you still have something left, give more or expand the circle of people you support.
  5. Support your endo-fellows.  One thing that warms my heart in the local facebook endo support group is to see people generously offering to drop in care packages, emergency supplies or even just company to others in hospital.  If you are up to a drive, consider that.
  6. Educate.  If there is a cause you are passionate and knowledgeable about and you want to share it with people, go for it.
  7. Volunteer at things where you can sit down.  Perhaps it is manning a stall at an event or festival, or doing a bit of face-painting at a school fete (although a word of warning as a former professional facepainter: it is KILLER on the back and shoulder muscles).  Is there a phone service you could help with?  If it is something physical within your ability to take it on, why not?
  8. Compliment people!  I’m not saying to be insincere, but doesn’t a nice compliment just make your day a little brighter?  If you like someone’s outfit, tell them.  If you think their work today was just fantastic, tell them.  It doesn’t take much from you but it might make a big difference to them.
  9. Forgive people.  A lot of people will say insensitive stuff about endometriosis or about you.  Generosity includes forgiving people for that, even when it hurts and is frustrating.  That doesn’t mean you have to keep hanging around that person, excuse their wrong or forget what was said, but it does mean you stop dwelling on it and being angry at them for it.  It’s good for you, too.

There are, of course, some things you should remember with this.  Rules, if you will.

  1. Whilst true generosity may include giving up things you want, it should not include giving up things you need.  Ensure that you have enough money set aside for medical expenses, food and rent before you give it away.  If you’re anything like me, you don’t know if you’ll be able to work sufficiently in the future to make up any deficit.
  2. Don’t overdo it.  It’s not much good helping someone for one day and going all out only to leave yourself bedridden for the next fortnight.  Know when to say no, and when to call it quits and go home.
  3. It is fine to advocate and be generous for a cause that helps you too.  If raising funds and awareness for endo is your passion, it is no less generous to give your time and money to that cause simply because you may benefit (although let’s be honest, anything we achieve in the endo sphere is really more likely to benefit the next generation than ours).
  4. Be generous to yourself!  If you are forgiving and complimenting other people and giving them time and energy, do a little bit of the same for yourself.

Overall, I think generosity is a little easier than gratefulness, but it still promotes a certain positivity of mind.  Sharing and caring feels good.  Feeling good helps you cope with pain and negativity better.  It’s a nice thing to do and a nice way to feel.

What are ways that you stay generous while suffering?  What is hardest for you?  Let me know in the comments.

The Tragedy of Domestic Violence

Big trigger warning.  The title should explain why.

1 in 6 women and 1 in 16 men in Australia will experience physical domestic violence at the hands of an intimate partner.  When the definition is expanded to include emotional abuse, the numbers grow.  I think everyone can agree that’s far too many.

It’s a subject close to my heart.  The majority of my work as a lawyer is to do with domestic violence.  I’ve assisted people of every demographic, from the very young to the very old, male, female or nonbinary, and in many different types of relationships.  The number of people I see suffering from family violence is horrific.

It’s not just partners, either.  It’s children hurting or being hurt by their parents, siblings attacking each other, or vengeful exes going after their former partner’s family.

All in all, it’s a bleak, depressing and sometimes deeply traumatising area to be involved in, and I’m only dipping into these scenarios for the brief moment that they collide with the legal system.  I don’t actually have to live it.  My heart goes out to the people who do, particularly those that never even make it to the point where they can seek legal help.

Now, when I’m talking about domestic violence, what do I actually mean?  Obviously it involves violence between two people who are related or in a relationship.  Physical or sexual violence are the most obvious examples – hitting, shoving, strangling, sexually assaulting someone, etc.  But most jurisdictions also make provision for things like harassment, intimidation, stalking, threats, and generally tormenting someone, as well as financially and/or socially controlling them.

Each state and territory in Australia has its own specific legislation that deals with domestic violence, each defining it in slightly different ways and each making different requirements on the courts and the police.  The Family Law Act 1975 (Cth), which applies everywhere except WA, also defines family violence quite broadly to include the above.  WA has a nearly identical bit of family law legislation, but had to be special and couldn’t possibly just sign up to the same one as everyone else.

There’s  lot of myths and misinformation about DV floating around Australia.  One of the most infuriating things I hear people say about domestic violence is, “Why didn’t they leave?”  The reason people experiencing DV usually don’t leave varies from person to person, but it could be any of the following:-

  1. They still love the abuser and believe that they can change;
  2. They believe that it is their own fault and that they need to work harder to please the abuser to make it stop;
  3. They are scared of being alone and feel being in a bad relationship is better than no being in one at all;
  4. They have children and are worried about what will happen if they leave them behind;
  5. They have children and don’t know how they will provide care to them if they leave with the children;
  6. They are a child themselves and may be forced by authorities to return home;
  7. They do not know how to survive without their abuser;
  8. They are financially controlled by their abuser;
  9. They are socially isolated and have no support or assistance;
  10. They do not recognise that they are experiencing abuse;
  11. They are too scared to try and leave in case their abuser catches them.

It could be one of these factors, or it could be several or all of them.

But what does any of this have to do with endometriosis?

Well, imagine you are feeling one of the things on that list but are then chronically ill as well.  Someone with endo also has to ask themselves, “How will I afford my medication?  How will I support myself when I’m sick?  How can I care for my children without help?  Who will take me to the hospital?  How can I afford rent if I can’t work?” Chronic illness massively adds to the difficulty of trying to escape an abusive relationship.  People with chronic illness are already more likely to be experiencing financial difficulty, social isolation and reliance on another person than your average, healthy person.  That makes us even more vulnerable.

HOW TO ESCAPE

So, if you are experiencing domestic violence, what can you do?

Well, the first step is getting in touch with a domestic violence service.  They range in what they can assist with from advice to coordinating your escape, depending on the service.  The Victorian Organisation, Domestic Violence Resource Centre Victoria, has a great list of resources for all over the country.

I strongly recommend also getting in touch with a lawyer.  They will be able to speak with you about getting a domestic violence order (noting that they are called different things in different states, such as Violence Restraining Orders in Victoria and Apprehended Violence Orders in NSW).  Domestic Violence Orders, or DVOs, can keep you safe by making it a criminal offence for the abuser to come near you or your home, among other things.  However, a DVO isn’t the right option for everyone, which is why I advise talking to a lawyer.  I have specifically told people not to get them before because I think it will make their situation worse or put them in more danger.  However, if it will help you, seeing a lawyer will make it much easier.  Rather than pay for a private lawyer, consult your nearest Legal Aid or community legal centre – many of these places will assist you for free.

In some states, such as NSW, it is better to talk to the police, who will take the order out for you and run the case from start to finish.

Those are the big two first steps to take.  However, there are some practical steps that are also worth considering:-

  1. Getting a parcel locker or PO Box so the abuser cannot intercept your mail;
  2. Creating a separate bank account with a new password that the abuser will not be able to guess;
  3. Separating yourself on any joint services such as Centrelink;
  4. Ensuring that your medical care providers know that the abuser is not to receive any information about you and should not be considered your next of kin;
  5. If you own a house in both names, making sure that the abuser cannot take money out of the mortgage or change the mortgage amount without your signature by talking to your mortgage provider;
  6. Making sure that location services are turned off on your phone;
  7. Checking your vehicle for tracking devices.

In many cases some of these steps will not be necessary, but think about your situation and decide what is best to do.

I also strongly recommend reading the various tips and stories in this guide.  It’s specifically about escaping abuse with a disability.

HOW TO HELP

What if you know someone who is being abused?  First and foremost, be gentle.  They may not yet recognise the behaviour as abusive, or may feel that they can’t yet leave.  Telling them simply to cut and run is not supportive, particularly if they are facing the obstacles I mentioned above.  Instead, ask them how you can help.  Do they need a place to stay for a while, and can you offer that?  Do they need an interest-free loan, and can you afford to do so?  Can you help coordinate their escape, or babysit their children, or do the school run for them?

Generally speaking, I would not advise calling the police unless they are in immediate danger, such as if you walk past the house and hear them screaming for help, or if they call you and ask you to do so.  If you call the police when there is not a crisis, scared abuse victims may defend their abuser.  Further, it could put them in more danger if the abuser believes that they called the police.  Alternatively, the abuser may force them to cut contact with you.

If you think a friend is being abused, you can also contact one of those resources above to seek advice on the best thing for you to do in the situation.

 

Are you one of the brave souls who has managed to break free of a violent relationship?  If you have endo or another chronic illness or disability, how did you navigate it?  Any tips I have missed, or anything you disagree with?  Let me know in the comments.

 

 

9 Tips for Tolerable Sex When Everything Hurts

I’ve put off writing this for a long time because my mother reads this blog.  That’s why this post will not discuss my personal experiences on this topic, thanks all the same.  However, sex is a thing and people with endometriosis generally still want to have it, so I feel duty bound to complete this post, however embarrassed my conservative upbringing may make me feel about it.

Anyway.

I realise this post has a very depressing title.  Tolerable sex?  Don’t most sex advice posts offer you “great” or mind-blowing” sex, or something like that?  Yes.  However, for people with endometriosis there can be all sorts of hurdles in the way of an enjoyable sex life.  To start with, those of us on the pill or other forms of hormonal contraception are very likely to have an extremely reduced libido.  One of the most common side-effects of the pill is to reduce the sex drive of the person taking it, and in some cases eliminate it completely.

When you get past that problem, many people find that vaginal intercourse is intensely painful even when they are keen for it.  The fancy name for pain caused by sex is dyspareunia, in case it comes up at your next trivia night.  This can be for a number of reasons.  For some people it is simply a lack of lubrication, as hormonal medication has a tendency to dry you right out down there.  For others, it is the motion pulling and pushing on endometrial growths, causing pain and sometimes bleeding.  This generally causes pain deep in the abdomen that can be achey or stabby.  Still others may suffer from vaginismus, which is the involuntary tightening of the vaginal muscles, making penetration extremely difficult and painful.  As far as I know there is nothing to suggest that endo can cause vaginismus, but it certainly doesn’t help.

For those that do manage to have painless sex, some may find that pain strikes later.  Some  suffer from anorgasmia (the inability to orgasm), which, whilst not necessarily painful, is extremely frustrating.  Others have dysorgasmia, which is a painful orgasm.  Others may orgasm without pain, but find that post-intercourse they suffer awful cramps.  Many people with endometriosis may find that they bleed after intercourse regardless of pain.

All in all, it’s easy to see how your standard penetrative vaginal intercourse, even when given much sexier names than that, can quickly become a desperately unappealing prospect for people with endometriosis.  Of course, this can have negative impacts on any relationship, including frustration by the healthy partner (and the partner with endo where sex drive exists), and horrible guilt by the one with endo.  It also is especially difficult for those desperate to conceive, given that sex tends to be a necessary step in that process.

That’s why I’m not trying to convince you that anything I say here will restore anyone to a state of “mind-blowing” sex.  Some people with endometriosis may have amazing sex lives and put rabbits to shame.  However, that’s not the reality for many, so I don’t want to get anyone’s hopes up unnecessarily.  This is a survival guide, not an improvement manual.  For mind-blowingness, go to Cosmo (but take their advice with a grain of salt because some of it is WHACK).

So, what are some ways to deal with these very frustrating aspects of endometriosis?

1)  Try other things

There are alternatives to vaginal intercourse.  Slow down.  Explore each other’s bodies.  Touch each other gently.  Experiment.  See what works for you as a couple to give you satisfaction without pain.  As a bonus, even slow sex drives may start to find themselves emerging from hibernation given the right stimulation.

Alternatively, if dysorgasmia is your problem, experiment with sexual contact that gives you fulfilment and satisfaction without orgasm.  Reframe sex in your head so that an orgasm is not the goal and you’ve failed if you don’t reach it; aim instead for feelings of pleasure, or emotional and physical closeness, or even making your partner ecstatic.

However, if this is unsatisfying and you really want to have vaginal intercourse…

2)  Try other positions

For those experiencing pain during intercourse, try some different positions.  Some positions may be horribly painful, others may be less difficult for you.  Some women (not many) say missionary is easiest because it allows them to lie still and relax (something literally everyone recommends when trying to achieve either an orgasms or easier penetration), whilst others prefer cowgirl as it gives them control over the depth, speed and angle of penetration (all important factors in pain levels).  Many find doggy style easiest as they are braced and stable and the position of the uterus is such that is causes less pain.

3)  Try other times

Some people may find that the pain is worse right around their period or when they are ovulating.  Track it.  I’m serious.  Write down what part of your cycle you are going through and how painful the sex was, and see if there is a pattern.  Then you’ll know your safe times vs your painful times, if that applies to you, and you’ll be able to plan for a less painful sex life.  Sure, it’s not glamorous or sexy and totally lacks spontaneity, but on the other hand, you have something to look forward to each month.

4) Use lots of lubricant

As I said, hormonal medication dries things out.  Use bucketloads of lubricant for less friction and thus less pain.

5)  Try dilators

If you have an extremely tight or tense vagina or suffer from vaginismus, many specialists may recommend vaginal dilation to try and teach your muscles to expand and relax.  You can start really small and work your way up gradually to sizes that might represent your partner’s accoutrement.

6)  Resort to painkillers

Again, this takes away any sort of spontaneity from the occasion, but endometriosis does a lot of things that aren’t sexy, so this probably isn’t terribly unexpected.  Popping some panadol about half an hour to an hour prior to sex may help reduce the pain during and after.

7)  Plan for afterwards

Are you a heavy bleeder?  Put a towel down first.  Know you will cramp up?  Have a quick shower to get clean, then get in a warm bath pronto to help keep yourself relaxed, or get your partner to grab you tea and a heat pack whilst you tidy up.  Take painkillers afterwards too, if you need.  Make sure you don’t have any big plans for afterwards so you can lie down and have a cuddle whilst you rest and recover, and get into comfy clothes.

8)  Keep talking

Talk with your partner about everything to do with this topic.  Let them know how you feel about sex.  Reassure them that pain or lack of drive is not a lack of love or desire and isn’t necessarily anything that they are doing wrong.  Ask them to be patient and gentle with you.

Talk beforehand.  Let them know what you will need them to do, ensure that they will listen to you, and ask them to get things ready to help you recover afterwards.

Talk during.  If something hurts or is uncomfortable, say so.  Suggest a position or rhythm that you think will work better.

Talk afterwards.  Discuss what you loved and what might be done differently next time.  I’m not saying you have to get coldly analytical, but it is worth debriefing so you are both on the same page for next time.

9)  See a professional

Did you know that sex therapists are a thing?  They are.  If sex is just not working for you but you really want it, go and see a sex therapist.  They will be able to suggest different methods and techniques, as well as deal with the emotional and mental consequences you and your partner may be suffering.

If your problem feels muscular, it may also be worth seeing a pelvic physio.  They will be able to give you exercises to help strengthen the muscles and the muscular control in the pelvis, which should help you be able to deliberately relax as well.

 

That about sums it up.  Nothing here is terribly ground-breaking and I’m sure much of it repeats what other people have to say, but hopefully it is of help to some.

If you feel comfortable sharing – do you have any tips I’ve missed?  Any problems I haven’t listed?  If there is something that helps you that isn’t here, please let me know in the comments.

 

Broken Hearts and Bleeding Wombs: Navigating Romance with Endometriosis

Trigger warning for breakups, pregnancy and infertility

Relationships are hard work.  Anyone can tell you that.  Even when they feel as effortless as breathing, they need looking after or that sensation will go away.

Add endometriosis into the mix and things get a whole lot harder.

Quite apart from the impact on your physical intimacy, which I will talk about more in a later post, endometriosis can be a real burden to both partners (or presumably more, if you are polyamorous.  I’m not, so I don’t really feel qualified to discuss that particular dynamic here.  Guests posts welcome).  As I’ve talked about before, endo puts a whole bunch of limitations on your ability to earn money, be an equal participant in household chores, help with the physical work of caring for children, and drains your ability to be emotionally available.   How can you give your partner’s struggles the care and attention they need when you are barely keeping your own head above water, emotionally speaking?

I’ve always earned less money than my husband despite being on the same career path.  That’s a function of being five years younger and not being a super whiz-kid who tore through a degree in record time and marched smartly up the ranks of the legal profession.  I was three years older than my husband was when I actually started practising as a lawyer.

Mostly, that’s never bothered me.  My income is still good and I love the work I do.  However, I do get bothered when I am sick all the time and not earning anything at all.  Financial security is good, and not having it is scary.  Although it has yet to become a source of conflict between us rather than mutual fear and sadness, financial problems are the number one cause of relationship breakdowns in Australia.  It puts an enormous amount of strain on your partnership.

It would be very easy for my husband to be angry or annoyed at me for my inability to contribute.  I celebrated a small victory yesterday because I did some laundry AND unloaded the dishwasher (I was too sore to reload it, though).  I’m paying for that today, apparently, with crippling pains, muscle weakness, nausea and a truly angry stomach keeping me home from work.

One struggle that I often see my husband going through that I simply can’t help with is his own frustration and guilt that he can’t make me better (irrational but totally unavoidable when you love someone), and his anguish at seeing me in pain.  That can be incredibly hard to deal with, because then I feel guilty that I am making him sad, and upset that I can’t comfort him because I need comforting myself, or frustrated that I am comforting him when I need him to comfort me.  It hurts me to see him hurting just as it pains him to see me in pain.

In a way I am very lucky that my troubles began when I was already in a really well-established relationship and we had committed to a life together with the deepest sincerity.  If I’d been this physical wreck when I first met him, I think I may have scared him right off.  I wouldn’t want to date me, that’s for sure.

I’m also lucky that an inability to have children isn’t a dealbreaker for him.  I don’t know if I’m truly infertile.  We’ve never tried to conceive.  However, the fact that I require 2-3 contraceptives to live life like a relatively normal human doesn’t bode well for having babies.

However, in too many cases, the relationship will be too young to survive the troubles, or the frustration of the healthy partner and the guilt of the one with endo will just create a fracture in the relationship that can’t be fixed.  I don’t have a cure for that.  I’m not a relationship expert and if endo is the cause of the trouble, that’s not something that will go away.  However, I do have five tips that I’d suggest any couple where one (or both) parties have endo consider.

1) Communicate

Ok, yes, every relationship book ever says this, but it is doubly true in this case.  Tell your partner what you are experiencing in terms of pain, and make it clear what you need from them.  Tell them what you can and can’t do.  Say, “If you bring the washing over here I can fold it if you can put it away.” “I can chop the vegetables for dinner if you can do the actual cooking.” “I’m in terrible pain and I need a heatpack and a hug.” This helps give them a way to help you, which will help alleviate guilt they may feel about not being able to cure you.  It also demonstrates that you are willing to help as much as you can.  On that note…

2) Do what you can

If there is a household task you can accomplish that won’t leave you bedridden for a week, do it.  If you are having a healthy time of it, get stuck in – cook a bunch of meals to put in the freezer, do a deep clean of the bathrooms.  It stores up brownie points for when you are sick, shows that you aren’t slacking off for funsies, and helps take some of the burden off your partner when you do have a flare-up, because they only have to maintain the house at the level you have it at.

This applies to dates and taking time for yourselves as a couple, too.  If you are healthy, seize the day.  Go and have dinner out together or see a movie.  Go for a walk.  Spend time as a couple, unburdened by illness for just a few hours.  Talk, kiss, reconnect.  Treat yo’ selves, emotionally speaking.  Treasure the good times and store up good memories.

Don’t forget to say thank you.  We are worthy and deserving of love, but our partners will often have to go above and beyond for us.  A simple thank-you can remind them that you notice the hard work that they do, and that it doesn’t go unappreciated.

3) Be thrifty

This is a good tip for life anyway, but when you are getting paid regularly, put as much as you can afford to into savings so you have a cushion for when work just isn’t happening.  I’m a massive hypocrite for saying this (although less so this year) but avoid splurging on things you don’t need except as the occasional treat.  This applies to both partners – putting money away against financially hard times will help ease the financial stress and pressure when the income starts to vanish.

4) Be clear at the start

If you are only at the beginning on the relationship, but think things might be getting serious, you have to have the serious talk, regardless of how embarrassing it is or how clingy you think it might make you.  You need to talk about how much having children matters to each of you, because it may not happen, and if that’s a deal-breaker for your partner it is way better to find out at the beginning.  Talk about how your endometriosis effects you.  If your partner requires someone who will always be their running buddy, their sugar-mummy (or daddy), their dedicated housewife who will always have the home in tip-top shape, or someone who will spend 90% of their free time in the bedroom, endometriosis may well throw a spanner in those works.  If they love you and can live with the inconvenience and the consequent emotional burdens, fantastic – full-steam ahead.  If they can’t, end it now before you have intertwined lives that you can’t separate without horrible pain and angst.

Which leads me to…

5) Accept the end

Sometimes relationships end, even really strong ones.  I practice in family law, and it just breaks my heart when 80-year-olds who have been together 60 years come to me for advice about their divorce.  The thing is, seeing some of the trouble in these relationships, and being a human being who has her own failed romances, I know that sometimes it is better that things end.

Ending a relationship when you have endometriosis is and will always be very hard.  You will have to struggle with a lot of feelings, including guilt for having the disease in the first place, anger that the other person’s love for you wasn’t strong enough to deal with the bad stuff, and terror that you won’t be able to handle things without the support you have grown reliant on.  Ending relationships, particularly long-established ones, is a messy, expensive and difficult business, and often it drives warring couples to stay together far longer than they should and make everything even more toxic.  I don’t really have any tips for dealing with that, except to engage with a professional to talk about it if you can, and to recognise when the emotional trauma of staying together exceeds the practical benefits.

 

That’s a depressing note to end on, but it is worth noting that not every relationship with endo will crash and burn.  It is common but not universal.  Strength, patience, courage, kindness, love and determination are needed in bucketloads by both partners.  I’m going to end this on a quote that I think really defines what makes a relationship in any circumstances, but is just vital for people with endometriosis.

 Love is patient, love is kind. It does not envy, it does not boast, it is not proud.  It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.  Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres.

1 Corinthians 13:4-7

 

Have you lost relationships due to endometriosis?  Do you have any tips on keeping things together, or on picking yourself back up when they fall apart?  Or please, share a happy story about how your relationship has prospered despite it!