Tag: Support

2019 Election: Health and Disability

Published on by Bubbles in the BrainLeave a comment

Unless you have been living under a rock for the past month, you are probably aware that we have a federal election happening on 18 May.

Now, I have my own views on who to vote for and on the policies of the major parties.  I definitely encourage everyone to read up one who is saying what about all the important matters.  However, there are two policies particularly relevant to those of us with endo that I want to summarise here: health and disability.  I’m going to outline the policies of Liberal, Labor, the Greens, One Nation and the United Australia Party (aka the Clive Palmer party).

This should not be treated as a how-to-vote guide.  A party may have great policies on health but terrible policies on another area that matters just as much.  It’s also not going to capture my views on the parties: this is literally just a summary of what their stated policies on health and disability are.  I also acknowledge that other issues directly impact women with endo, such as issues around homelessness and employment.  I’m only going to touch on those where I think they will have a very noticeable impact on people with chronic illness, rather than a general one.

If you are struggling with keeping up with all the different views of the many, many parties contesting, I encourage you to have a peek at Vote Compass.  It can be really helpful in figuring out how you align with the major parties on big issues.

Now, without further ado and in no particular order:-

The Liberal Party

The Liberal Party, for my non-Aussie readers, is our current government.  They fall to the right on the political spectrum, generally speaking.  So far in the election they have been running on an economic platform.

The Endometriosis Action Plan has come to be during the Liberal Party reign, although it received perhaps its strongest support for Labor Senator Gai Brodtmann, who has been a fierce advocate for people with endometriosis.  As far as I am aware, the plan received bipartisan support.  Although the Plan puts some money towards improving care, the majority of funding goes to education and awareness.

When it comes to welfare, the Liberal focus appears to be on those who can work, but are currently unemployed, rather than those who can’t.  Their website talks about initiatives such as cashless welfare cards and work the dole programmes.  I strongly encourage those with endometriosis or chronic illness to research these initiatives and determine whether they are likely to hurt or help.

In their health policy, Liberal pledges to:-

  • commit up to $29.1 billion to hospitals by 2025, including increasing funding to specialist care for chronic pain treatment;
  • continue funding Medicare and the PBS;
  • invest $308 million in reducing the cost of medication for people using multiple medications;
  • increase access to MRIs;
  • devote $4.8 billion to mental health care; and
  • Put an additional 3,000 nurses and allied health professionals in rural medical practices.

The page also talks about reforms made over the past 4 years, but it is not clear from the page whether that funding and policy will continue.  One assumes that that is the intention but I don’t want to put words in their mouths.

When comparing themselves to Labor they emphasise that they have committed greater funds during their term than Labor did during theirs, and that Labor once blocked 7 medications from being included on the PBS.

The Labor Party

The Labor Party website is a little less easy to navigate, with policies laid out singly rather than grouped by area, like “health”, but I’ve gleaned what I can and summarised below for you.

In disability, Labor pledges $10 million to disability advocacy (although it isn’t clear whether endometriosis or chronic illness more generally would be considered a disability).  They aim for a 6% disability quota in the APS by 2022.  They say they will reform the NDIS to close the gap between it and mainstream services.  They will also amend the Terms of Reference of the Royal Commission to include redress.  They will invest $300 million into students with a disability – again, it is unclear how disability is to be defined in this context.

Under Hospitals, Labor pledges to restore the $2.8 billion of funding to hospitals that they allege the Liberal Party is cutting.  They also pledge $500 million to reduce emergency room waiting times.  They state that they will close the gap in health care between rural and metropolitan areas.  They will increase staffing at Medicare and Centrelink, which would hopefully improve access and decrease wait times.

They state that they will reverse Liberal cuts to penalty rates.  I include this because many people with chronic illness find themselves working in casual positions due to the unpredictability of their illness making full- or part-time work impossible.

In the mental health area, Labor will invest $200 million in Headspace.

In reproductive rights, an area the Liberal Party doesn’t touch on at all, Labor will work to decriminalise abortion, and (significantly for those who use contraception to manage their endo) increase access to contraceptives, particularly long-acting ones such as the implanon and mirena.  They also directly mention endometriosis, saying that they will be

“Addressing specific reproductive health issues such as endometriosis, polycystic ovarian syndrome, transvaginal mesh and female genital mutilation.”

They have committed to continuing the Endometriosis Action Plan.

The Greens

The Greens have kindly collated all this information on just one page, which made accessing it nice and easy.  From this page you can download individual, more specific plans.  Say what you will about their policies – this website is very helpful.

The Greens say that they will fund a “truly universal” public health system, and reduce hospital waiting times (not clear if this is for surgery or emergency rooms or something else).  They will do this by funding Medicare – there is a big emphasis in their platform of ensuring that people don’t feel they have to pay for private insurance to access quality care.  It is worth reading that document – it includes details such as a $3.5 billion plan to increase care for people with chronic physical and mental illness, including $750 worth of care and a national framework for diagnosis and treatment.

They will increase mental health funding and work to destigmatise mental illness.

They pledge to raise Newstart and the New Parenting Payment by $75 per week, which will help those people with chronic illnesses who are too sick to work but can’t meet the very strict requirements for the DSP and so get stuck on Newstart long-term.

They will increase general accessibility for people with disabilities.  It’s worth noting that the Greens do have a Senator who uses a wheelchair (Jordon Steele-John), who would likely appreciate the systemic barriers people with a disability can face.

The United Australia Party

I love you, my readers, but I don’t love you enough to listen to all of Clive Palmer’s speeches in the hope one of them mentions health.  They don’t talk about them in the title.  You can do that here if you want to.

However, I have scoured his “Vision for Australia” document looking for policies.  Basically he keeps talking about boosting the economy through his various strategies, and mentions health only tangentially.  He will

  • build more hospitals;
  • reduce income tax (helpful for those sickies healthy enough to earn enough to pay tax but who are struggling financially);
  •   commit $80 billion in funding to health for the next three years;

and that’s all I could find.

I’m also not 100% clear when this document was published, as the URL includes “2015” and the stats all seem to be from around then.

In summary, the UAP is very much about the economy and getting the money – the details on how it will be spent may be available but if it is, it’s not easily found on the website.

One Nation

One Nation has a very pretty website, but not a lot of detail on health or disability.  There is definitely more of a focus on immigration, Islam and refugees.

All I could really find in the health sphere is support for sick people accessing medical cannabis, although they don’t outline specifics of how that support looks (legalisation, decriminalisation, licensing, etc).

In terms of accessing Centrelink, they want to introduce an identity card to fight against people rorting the system.

That’s all I could find on their website.  Really, that’s it.  If someone else finds more, please let me know, because this just seems lacking.

 

I hope that may have been helpful to those who didn’t want to sift through reams of election promises to find out how folks with endo would be effected from 19 May.  Please remember to vote properly and consider voting below the line to control where your preferences go, or research who is referencing whom to make sure you know what happens if your party doesn’t win.

Here’s hoping for a great future and ongoing support in the health arena.

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RUOK Day and the Cake of Doom

Published on by Bubbles in the Brain1 Comment

TW: Suicide, mental health

Yesterday I explained that I am engaged in a battle to the death over who at my workplace can make the best cake.  I will tell you the results of that epic showdown, but first I want to talk a bit about RUOK Day.

Did you know that 8 Australians take their own lives every single day?  Even higher numbers than that make attempts.  Rates of suicide are higher amongst men.

This is particularly relevant to people suffering from endometriosis, and chronic illness in general.  Why?  Because there are three main factors that make it more likely that someone will commit suicide: social isolation, feeling like a burden, and the means to follow through.  I’ve talked before about how easy it can be to become socially isolated when struggling through a flare-up, and that feeling like a burden is one of the many mental side-effects of physical pain.  With the amount of strong painkillers many of us have access to, means to follow through completes the endometriosis-suicide trifecta.  We are an at-risk group and today really brought that home to me.

RUOK Day focuses less on people at risk of suicide, though, and more on the rest of society and what ordinary Australians can do to help their friends, colleagues or loved ones through the power of asking a simple question, “Are you ok?”  It teaches listening without judgement, helping the person struggling to seek appropriate help, and continuing to check in with them (in my view the most important step of all).  It’s never going to be an easy conversation to have – it may be embarrassing and overly intimate for both parties, but they are right when they say it can save lives.  I encourage everyone to head over to their website, watch some of the informative videos they have on how their system works, and put it into practice.  Use this day as a chance to check in with friends and family.  That simple act of connection may pull someone back from the brink.  It may pull you back.  I’ve written before about the importance of maintaining social connection even when you feel like you can’t.  Take a step to do that right now.  Ask yourself, “Are you ok?”  If you aren’t, speak to someone.

On a lighter note, my workplace wisely decreed that the path to mental health is built on cake.  Ironically, I had to fight my way through crippling knee pain (my knees were swollen and aching from referred back pain) to make my cake, I literally lost sleep over it, I would have skipped dinner if not for my husband, and I shed real tears.  Not my proudest mental health moment.  However, the cake was a success!

I was attempting to recreate Anthea of Rainbow Nourishment’s glorious Golden Gaytime cake.  For those outside Australia going “um…what?” the Golden Gaytime is a popular and delicious ice-cream that is sadly not vegan.  I based my recipe partially on Anthea’s ice-cream bites of the same flavour, and improvised a whole lot.  I topped it with a bunch of things from her beautiful e-book, “Nourishing Treats”, including date-tahini-caramel swirls, hazelnut chocolate dough, and vegan Ferrero Rochers.  I also made some banana popsicles but the cake was so full of treats that it didn’t need it (and they also were just really unfortunately and inappropriately shaped).  On the plus side, they are safely in my freezer where I can eat them all.

Although it lacks the professional finish of Anthea’s cake, I was pretty proud of how it came out.

My cake 1.JPG
We had a crunchy chocolately base, a caramel ice-cream layer, a chocolate ice-cream layer, a vanilla ice-cream layer, chocolate drizzle, tahini-date caramel at the edge, chocolate hazelnut swirls, Ferrero Rocher bits, shards of chocolate, cacao nibs and cookie crumbs – all made from scratch!

I was up against some very stiff competition, though.  There were six cakes in all.

Banana and raspberry.JPG
I was tempted to try and steal that nice little chopping board.

Offering number one was this banana raspberry creation, vaguely reminiscent of an aeroplane.  This cute little number was a runner-up (ranked in the bottom three) and won a box of cake mix.

White chocolate and macademia.JPG
Does anyone else always try and spell macadamia as “macademia”, like some bizarre cross between nuts and university research?

Offering number two was this plate of delicious-looking white chocolate and macadamia cookies, which deserve special mention as the baker was sick with a sinus infection and still loved his colleagues and the promotion of healthy minds enough to bring in biscuits for us.  Despite his efforts, these biscuits also landed as a runner-up and also won some cake mix.

Hamburger.JPG
Doesn’t the “cheese” look disturbingly realistic?

Offering number three I found unbelievably odd.  This cake actually looked very much like a cheeseburger.  Now, don’t get me wrong, I love a good (vegan) cheeseburger, but there is something about seeing one in cake form that just does my head in.  However, it is very clever and landed a neat third place.

Chocolate and raspberry.JPG
Beautifully presented and it smelled AMAZING.

Offering number four was this decadent gluten-free chocolate-raspberry cake, which was apparently full of whiskey.  This was the one I was most sad about not being able to eat because it looked so good (mine was the only vegan cake so I couldn’t taste-test any of the others).  To my surprise this cake also only made it into the runner-up position – I think maybe not enough people tried it as it was on the smaller side.

Maltesers.JPG
The inside sponge was vegan so I did manage to nab a taste of that and it was admittedly delicious.  Why must I be surrounded by such talented women?

Finally, my main competition, made by my work bestie and towering over its competitors: the gravity-defying Malteser cake.  It is with a heavy heart that I admit that this cake beat mine to take out the main prize of a silicon muffin tray and loaf tin, and I walked away with second (a very nice glass tray).  Admittedly it was an excellent cake and the win was not undeserved.

Layers.JPG
A better look at the layers in my creation.

All in all, I was very happy to come second.  I had some stiff competition and although mine looked incredibly decadent, it wasn’t particularly sweet.  Barring the chocolate, it had no refined sugar and relied on date and a small amount of maple syrup in the Ferrero Rochers for sweetness.  However, I think the lack of sweetness may have worked in my favourite – it was cold and relatively refreshing and I think would have stood out because of that.  It also managed to be quite rich, thanks to being 90% coconut cream, and had all sorts of textures thanks to the crunchy base, nutty crumble, stiff chocolate and smooth creamy layers.

So, what’s the take-away from today?  Eat cake, but don’t hurt yourself to make it.  Perhaps more importantly, look after your mental health, and look out for your friends.

Talking to Children About Their Endometriosis

Published on by Bubbles in the BrainLeave a comment

According to modern medical wisdom, there’s a whole bunch of reasons why someone will get endometriosis.  Unfortunately, one of the factors seems to be genetics.  It can be inherited through either the paternal or maternal line, so don’t be too quick to blame your mother just because she’s got the requisite equipment, so to speak.

Anyway, if you’ve got it, there’s a good chance that any children or grandchildren of yours with the corresponding reproductive organs could develop it too.  Alternatively, you may be someone without the disease but have found out that your child has it.  Either way, your chat with them is going to have to be a little more comprehensive that the usual “talk”.

Now, I’m going to assume that this particular chat isn’t going to need to happen until your child starts to get their period, so this is mostly going to be aimed at 12-15 year-olds.  I know some children do get their periods younger than that, but even in those cases, it generally takes a few years for the symptoms to become obvious enough to start seeing a doctor about.  I think I got my period around 11 or 12, but I didn’t really become conscious of severe pain until several years later, at 14 or 15.  My experience isn’t universal, but it seems to be the age most young people become aware of it, so that’s the age that this post will be pitched at.

First and foremost, I think it is vital that young people understand how their own body works.  I also think they should get the anatomical breakdown of the bits they don’t have, because understanding the human body is useful and important.  Regardless, knowing their own internal workings will help them understand exactly what the disease is and how it is effecting them, save a lot of time in the doctor’s office, and make explanations from any treating specialists a lot more comprehensive.  Make sure your teenager knows the meaning of uterus, ovaries and Fallopian tubes and how they work together.  Make sure they understand the menstrual cycle, and not just the period.  Explain ovulation and how our hormone levels can fluctuate based on what stage of the cycle we are at.  Explain how the different stages of the cycle effect the body.  Most importantly, establish what is normal and what should be concerning.

Second, listen to them and believe their pain.  I’ve talked before about how we often aren’t believed.  Don’t be another person in a child’s life who assumes that they are exaggerating, hysterical or don’t know their own bodies.

Enquire.  If they say something is wrong, do a preliminary check.  If their periods are alarmingly heavy, ask about the frequency, whether they are having cramps, or if they are having bowel symptoms.  Encourage them to be open and honest with you or another adult they trust.

Get them medical attention, and fight for them if the doctors aren’t interested.  Young people tend to believe it when someone in authority tells them that they are wrong, and  I can say from bitter experience that it is pretty crushing and starts the cycle of having no confidence in your own assessment of your pain levels.  Talk them through their rights in the medical system and what to expect when visiting a specialist.

Give them autonomy over their own bodies.  The older they get, the more maturity they will be able to exercise in relation to their medical decisions.  Letting them have their opinions heard about particular options is important in helping them feel empowered.  I think it’s super risky to be forcing a teen into a particular course of treatment, particularly with a disease like this where everyone reacts so differently.  Give them the benefit of your experience and opinion, but my view would be that, if they are not happy with a proposed course, forcing them into it isn’t likely to be of much benefit, especially if they are an older teen.

Likewise, make sure they have a good relationship with their doctor.  I’ve changed had four specialists.  It’s important to find the one that is a good fit with you, particularly given that they are going to get up close and personal with your up-close-and-personals.  If they don’t have any confidence in their specialist, find them one that they can trust.  Ask what they want from a gynaecologist – they may want a particular age or gender, or to try someone recommended to them by someone else.

Encourage them to ask questions and do research.  Make sure that they have all possible information about their disease and whatever options they are pursuing, whether medical or surgical.  Link them up with a support group, particularly if you can find one of other young people.  Give them a place to share their experiences and chat with people their own age.  They might have questions that they don’t feel comfortable asking a parent or an adult doctor.

Be patient and understanding.  Of course you should encourage them to try their best and push through when they can.  It completely sucks, but it is the most unfortunate reality of endometriosis that we have to do stuff that it hurts to do.  However, if they say that they cannot do something because it is simply beyond their physical ability, don’t push them.  That does nothing but make us worse.  Let them rest and recover when they can.  I vividly remember being shamed out of sick bay during high school by unsympathetic nurses.  Don’t be that person.  We don’t like that person.

Facilitate them having as much of a normal life as possible.  Help them get to events with their friends and do extra-curricular stuff.  They might not be able to cope with the physical stresses of sporting classes, but perhaps they could do a painting or drama class.  If they can’t compete in the school athletics carnival, get them decked out in house colours so they can show their support.

Unfortunately, you may need to be a bit of a disciplinarian.  Teenagers make stupid decisions (actually, do we ever grow out of that?).  Even more than normal teens, young people with endometriosis need to safeguard their health.  That means a healthy diet, plenty of sleep, the right supplements, fresh air and sunshine, gentle exercise etc.  Many teenagers have the tendency to stay up super late and then sleep in for hours, things they can’t do during the school week and which messes with their circadian rhythms and whatnot.  I’m not saying they can never have a late night, but getting them to have a solid routine is really important because they have to go to school and school is full of germs which they are more likely than your average person to catch.  Likewise, if they would like to live off chips and pizza (wouldn’t we all) rather than a balanced diet, you may need to put a foot down.  Get them involved in making healthy meals that they will like, if you can.  My sister and I love making our own pizzas (although hers are mostly meat and cheese, so not a totally balanced diet there).

Ultimately, there’s no road map to parenting, and dealing with a child with a chronic illness will be even harder than raising a child in the pink of health.  How do you help your child with endo?  Any tips not included here?  Any difficult experiences you can share to help other parents avoid those situations?  Please let me know in the comments!

10 Things You Should Say to Someone with Endometriosis

Published on by Bubbles in the Brain1 Comment

Yesterday I listed 10 things you should not say to someone who has endo (yet we still seem to hear all the time!).  Being the helpful soul I am and determined to be more positive, I would like to provide a list of suggestions of what you could say instead.  This time I’ve divided it up into categories of friends, employers and medical staff.

FRIENDS

1) Can you eat here?

Not everyone with endo will have digestive problems, but a good number of us do and there can be massive limitations on the foods we can eat.  If you want to meet up for dinner, just flick us a quick text to check if we will be able to eat there.  If it is a restaurant that prides itself on incredibly spicy foods, or is heavily based on red meat and dairy, or tends to load its dishes with onion and garlic, all of which can be trigger foods, we might have to take some precautions such as calling ahead to explain our dietary requirements.

Similarly…

2) Is this something you can do?

I’m not saying you have to plan every outing around your endo-friendos, but if you want them there you may have to tweak some plans.  Someone who is relying heavily on serious pain meds, for example, should probably not be inviting to go-karting.  Some people are fine with sitting down and will love going to the movies with you; others might ask if you could rent a film and watch it at someone’s house instead because sitting hurts.

Also, please understand that your endo buddy may have to pull out at the last moment.  It’s annoying and unpredictable, this disease, and best laid plans will often go astray as a result.

3) I’m really sorry you couldn’t make it.  Can we catch up soon?

It’s just nice to feel remembered and included even when we can’t be.  🙂

4) How can I help?

You don’t need to feel an obligation to help, and we will often say that we’re ok, but it is so nice to be asked.  Of course, sometimes we will take you up on that offer.  Please also ask us back if you need our help!  We may not be able to do something super physical for you unless we’re having a really good day, but we rely so much on others that it is always lovely when we can do something to pay it back.

EMPLOYERS

5) Do you need us to make an adjustment to your work hours or duties?

Not every workplace will be able to provide that kind of leeway, and we totally get that.  However, if your employee is struggling with endo and you are able to offer them reduced hours or duties, even temporarily, it can be such a big help.  For instance, a few weeks back I was suffering really bad pain and nausea in the mornings, which made it impossible for me to get to work on time, so my boss very kindly let me start work at 10:30 for two weeks and not make the walk over to court.  It meant that I could actually get to work most days and at least achieve something.

6) This isn’t something we can do long-term.  We need you to look into other employment options.

It’s awful for us to hear that you can’t keep us employed because of our illness and it will cause us to feel a lot of pressure and guilt.  However, if you are no able to keep us employed because we can’t meet the standards of employment and reasonable adjustments can’t assist us, please, tell us.  If we have sufficient notice it lets us plan a graceful exit and get our lives as much in order as possible.  That’s far better than sudden, terrifying unemployment, possibly on bad terms with our employers.

7) We need X, Y or Z from you.

If you need any kind of supporting evidence or documentation, please tell us.  If we are constantly sick and you are prepared to accept a single note explaining our condition and the likelihood of continued absences as a blanket sick note rather than new ones for each block of illness, please let us know, because that helps us too.  We want to stay employed.  We like earning a living wage.  We may need accommodation from you, and we will do whatever we can, within reason and law, to make that easier on you are our employers.

MEDICAL STAFF

8) What have you already tried?

You can bet your bottoms we’ve tried at least something.  Rather than insisting we take another panadol, letting us explain that we are already on endone helps skip the unnecessary, “try this and lie down for a few hours” and explore new options straight away.  Plenty of times in the emergency department and in GPs the conversation has started out with, “I’ll just get you some panadol first,” and it’s an odd place to start.

9) Are you interested in having children?

Please ask this and then either pursue or drop it as appropriate.  I am lucky that most of the specialists I have seen have not pursued the question multiple times or pushed it as a solution.  Establishing early whether it is an option the patient is interested in or something you may need to accommodate in your treatment plan will really help us feel trust in you without feeling pressured or guilted into pregnancy.  Specialists who do this, we love you.

10) How is the pain affecting you?

A lot of doctors will ask how bad the pain is or where it is, but don’t tend to ask what kind of impact it is having on our lives.  That leaves many of us feeling like we aren’t being heard or like we haven’t properly explained our pain.  Saying that our pain is a 7 most days is one thing, and I assume it is useful diagnostically.  However, if I say that my pain is a 7 does that explain that it prevents me from walking, or that I can’t eat because I need to throw up every time I do?  Many patients are in too much pain to be rational and coherent, or face systemic issues such as language barriers, distrust of authority, or fear of hospitals, all of which prevent them from giving a proper explanation.  Asking this question is helpful and incredibly validating.  I don’t want to tell any medical professionals how to do their jobs, and I know ED doctors are short on time, but please remember that for patients the process can be scary, confusing and difficult, and things like this can make a big difference.

 

Endo people, what are questions you wish people would ask you?  Friends, bosses, doctors, nurses, what do you wish you could ask, or want to tell people with endo?  Let me know in the comments.

Broken Hearts and Bleeding Wombs: Navigating Romance with Endometriosis

Published on by Bubbles in the BrainLeave a comment

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!

Maintaining Friendships

Published on by Bubbles in the Brain4 Comments

As I’ve previously mentioned, trying to maintain friendships when you literally can’t leave your own house is difficult, but an incredibly important part of self-care to prevent yourself from sinking into a swamp of loneliness and isolation.  Either you rely on friends to come over, or you don’t see them.  So how can you go about maintaining those important connections when you can’t really socialise?

100 years ago, you would have had two options: go and see your friends, or write them a letter.  Even 20 years ago, it would have been that or an expensive phone call.  Thankfully, we now live in an age where instantaneous communication is cheap and accessible.  A lot of this post will focus on the ways that we can use technology to maintain connections, but I will talk about some other things too.

On that note…

1) Invite people over

It seems pretty basic, but a lot of the time people will a chronic illness will have a messy house, no energy, and a big sense of shame.  It’s hard to have the confidence to ask people over in those circumstances, because it seems more like an imposition than an invitation.  Sometimes, though, you just have to bite the bullet and say, “Hey, I’m really sick and my house is a mess, but I really want to see you.  Could you come over and watch a movie with me?  Dress code: pyjamas.”  Good friends will do it.  You just have to put yourself out there. It gets easier with practice.

There are plenty of things you can do as a bed-ridden endo-monster at stay-at-home gatherings – card games, video games, movies, scoffing pizza, doing a youtube tutorial together.  Shared experiences are so important for keeping connections and games, movies and fun activities will always make even a messy sick-house more appealing.

2) Make regular phone calls

I am shocking at this, so me writing this is total hypocrisy.  I think it’s a millennial thing.  I don’t know any millennials who enjoy making calls, and I work in an office surrounded by people who make calls for a living (which I must confess does kill your desire to make calls for fun).  However, hearing someone’s voice is a really good way to reconnect, and I tend to find that once I actually bite the bullet and make the call I end up chatting for ages.  It’s quicker and easier than texting or typing and the conversation can just flow.  Make it a regular thing.  Make a calling-people schedule, or set aside an afternoon where you just call people.

3) Make group chats

Facebook, Viber, Whatsapp, WeChat – some of the many hundreds of apps that allow everyone to chat together.  My friends and I are all on Whatsapp.  It took me forever to get on there, but once I was, I was back in the loop.  You can either be an active participant or more of a quiet listener.  Either way, it’s such a good way to catch up with friends.

4) Follow them on social media

This sounds a bit silly, perhaps, but I love seeing my friends on instagram.  I love to see what sights they have seen today, or what mad things they’ve done.  I don’t live near three of them, so getting to actually see little slices of their lives is super exciting for me.

Twitter is another great one if your friends are active tweeters.  Learn what random thoughts are going on in their heads, and use it for conversations.

Snapchat can also be fun.  Share snaps with each other to keep your friends updated about what you are up to and make them giggle with silly captions, or check out what they are sending to you.

5) Play games on shared apps

Maybe both of you love Words with Friends.  Maybe chess is more your thing, or Ticket to Ride.  There are so many game apps that let you play with or against friends.  It isn’t really a forum for D&Ms, but it is a good way of keeping that relationship there on a casual level, as well as having a bit of fun.

6) Support their endeavours

If your friends have a blog, youtube channel or podcast, listen/watch/read.  You may not be able to support them by attending their events in person, but you can up their views and give them honest support and feedback about their stuff.  It shows that you are engaged with them, proud of them, and committed to supporting them.  One of my friends is a playwright and it just kills me that I can rarely if ever get to see one of her shows, but if she is in town doing a preview, you can bet your backside that I will do my darndest to make it there.  Likewise, share your stuff with them – if you have written an article, recorded a song, done a cool piece of art, let your friends know.

7) Write letters

Ok, it is super old fashioned, but it can be so touching to get an actual physical letter from someone.  You don’t need an occasion; just write down what you love about them and mail it out.  It will be a nice surprise for them and show them that you are thinking of them.  You can make it extra special by getting all craftsy with it – do some doodles, add some scrapbooking embellishments, or learn some fancy calligraphy.  It’s not something you need to or can do all the time, but every now and then it is just a special way of connecting.

8) Take advantage of the good days

When you are well, let everyone know.  Shout it from the rooftops.  “I CAN WALK TODAY, WHO WANTS BRUNCH?”  Even if you have to go home after a while, being able to go out and catch a movie or go to someone else’s house is an important break in the monotony, a chance for some new scenery, and a way of showing that when you can reciprocate, you will and do.  It also gives you a physically shared experience to reminisce about later, which is so important.

 

As I said, these may seem really basic and uninspired.  However, when I’m falling into the doldrums these are exactly the kind of things I know I should do, but too often don’t.  I can’t emphasise enough the importance of having a connection to the outside world, and ultimately, half the burden of maintaining that does fall on us, sick or not.

What do you do to keep in touch with friends when you are really sick?  Any avenues that I’ve forgotten here?  Has there been a time when you’ve felt awful and your friends have really come through for you?  Let me know in the comments.

Picking Sidekicks: Who Gets To Be Your Support Network

Published on by Bubbles in the BrainLeave a comment

As I discussed in my last post, support is incredibly important.  You are the superhero and endometriosis is the enemy.  You’re in a life-long, multi-movie battle here, and you won’t make it through without your trusty sidekicks.  But where can you recruit sidekicks from?  I’d like to offer up a couple of candidates.

 

GROUP: FRIENDS

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ABILITIES: SUPPORT, BAD-JOKES, CAKE-MAKING, IMPROMPTU MOVIE NIGHTS, BASELESS COMPLIMENTS

Beware!  Sometimes this group can be infiltrated by impostors, such as the Fair Weather Friend.  Do not be fooled.  However, genuine sidekicks recruited from this group should provide much needed fun, fond memories, and shared experiences.  They will tell you you look great even when you haven’t brushed your hair in a week and have horrific hormonal acne, but also won’t let the rest of the world see you like that.  They’ll cover your escapes and make your excuses when you have to answer the call of the Endo-Signal, and they’ll bring you cake when you need to recover.  Because these bonds are forged by choice rather than necessity, they are genuine and strong.

 

GROUP: FAMILY

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ABILITIES: UNCONDITIONAL LOVE, MOTIVATION/NAGGING, PRACTICAL ASSISTANCE AT HOME

As with friends, beware: this group can contain some surprisingly toxic elements who undermine you and minimise the importance of your fight.  However, the good ones will have your back until death do you part.  They will help you get yourself together to fight the good fight, and they’ll help patch you up emotionally afterwards.  They’ll also have your back against those family members that don’t support you.  They will vary in tactics, from brutal honesty to genuinely believing that you are still pretty even when you closely resemble a swamp-monster.  Some will coo in sympathy and run you a bath, others will tut at the state of your kitchen but then clean it for you.  If the battle fells everyone else, this is generally the refuge you can always turn to.

 

GROUP: INTERNETwoman-1446557.jpg

ABILITIES: ANONYMITY, INSTANTANEOUS KNOWLEDGE, HUGE NUMBERS

There is strength in numbers, and there are numbers here.  Whether on chat rooms, facebook groups, reddit threads or endo forums, there are millions of people out there fighting the same enemy willing to share their experiences, tactics, and advice, and to listen to you vent.  Sometimes it can be an “endo is bad” echo chamber, but sometimes you need that.  The knowledge-sharing is extremely fast, and due to the anonymity of the forum many people are willing to share the gory details and discuss the sensitive topics that they wouldn’t be able to talk about in person.

 

GROUP: ENDO WARRIORS

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ABILITIES: EXPERIENCE, ENDURANCE, NATURAL SENSE OF ALLEGIANCE

Whenever I hear that someone else is struggling with endo, I feel an instant camaraderie with them.  It’s kind of like that little nod that motorbike riders share on the highway, and in this case it indicates respect for their battles and an “I get it.” Because you do.  When you are both struggling with the same disease, even though that disease is different between individuals, there is a shared pain.  Other groups can sympathise – this group can empathise, deeply.  They can provide a level of emotional support that no other group really can, as well as offering much of the same knowledge and experience as their anonymous online counterparts.

 

GROUP: MEDICAL PROFESSIONALS

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ABILITIES: SCIENCEY KNOWLEDGE AND SKILLS, GATEKEEPERS TO PAIN RELIEF

If there was ever a group you want on your side, it’s this one.  They wield true power.  It can be really hard finding a good group of them who are ready to pitch in with you all the way; too many of them don’t see Endometriosis for the super villain it really is.  The ones that do understand, though, should be roped into your support group and kept there forever more.  They are your generals; they can provide the best strategies for dealing with the pain.  They come in many forms – doctors, surgeons, nurses, pain specialists, physios, chemists – but they are all powerful in their own way.

 

Clearly, this post is a bit tongue-in-cheek, so I just want to take a moment to acknowledge a few realities.  Not everyone has friends who can support them.  Not everyone has family, or family who cares.  Getting a great doctor is an ongoing battle for so many.  For some people, two or more of these groups will overlap; for others, one group will be the only place that they can get their sidekicks from.  That’s ok.  You work with what you have.

I also want to take a moment to pay my respects to the behind-the-scenes people that we don’t always get to meet who support this fight in their own ways – the politicians who fight for change on a national level, the people who lobby for more finances, the advocates who petition for cheaper medications or more accessible healthcare, the wealthy who donate or start trusts for endo treatment or research, and the scientists who actually carry that research out.  We need these people.  If you are one of them and are reading this, please don’t stop.  We see what you do and we love you for it.

Readers, where do you draw the most support from?  If you find someone else suffering from endo, do you try and connect them with others?  Also, do you have more gimmicky, side-kicky codenames I can give these groups?  I feel like this post could be daggier.  Let me know in the comments!

10 Reasons Everyone with Endometriosis Should Have a Support Network

Published on by Bubbles in the Brain2 Comments

Trigger warning for suicide.

In previous posts I’ve touched on how important support has been to me.  I do not know how I would have coped without my mum and my husband in particular.  I would be a lot poorer, lonelier, and much less mentally healthy, that’s for sure.  I think it’s also unlikely that I would ever have got myself together sufficiently to have had my second surgery.  Maybe not even my first.

In this post I really want to break down why support is important.  I’ll be using the general term “support group” and “support network”, and that can cover really anything from other people with endo, to friends and family or a trusted treating team.  In my next post I’ll write more about types of support groups and how to find them or create them.

Support is important because…

1) It is validating

Support networks are vitally important for people with endometriosis.  I’ve already discussed how even the medical profession, who are supposed to be the ones that sick people can trust and rely on, repeatedly let us down.  If you are alone and faced with that kind of dismissal, it is incredibly hard to believe yourself and keep pursuing a diagnosis and treatment.  Having a support group reminds you that your pain is real and you deserve real treatment.   I went to hospital recently and was told my the emergency doctor that there was just no way that my back pain was related to my endo.  Unsurprisingly, it totally was (later confirmed by my surgeon), and everyone in my local support group said, yep, I get that, it’s an endo thing.  It’s a big confidence-booster.

2) It reminds you that you aren’t alone

This very much ties into the first point.  I cannot describe how empowering it is, after thinking you must be the only weirdo in the world suffering these symptoms, to find other people who say, “No, you’re not mad and you aren’t the only one.  I suffer this too.”  It’s not that you are delighting in the fact that someone else is in pain, it’s that it confirms that it isn’t all in your head, and gives you someone to commiserate with about the ups and downs of the endo journey.

3) It gives you social interaction

This may sound super basic, but it is really important.  Because of the way it prevents us from engaging in normal social activities, and often from just leaving the house, endometriosis is an inherently isolating disease.  Loneliness can be devastating even to someone who is mentally and physically well.  Add in constant pain and the emotional burdens that come with endo, and loneliness may literally be a killer.  At best, it can leave you flat and unmotivated.  I know that being by myself on really bad days, even knowing that my husband would be home in 8 hours, left me a total mess.  I wouldn’t brush my hair or my teeth, I would just lie on the sofa and alternate between staring into the distance and thinking miserable thoughts, and crying myself silly.  Sometimes interacting with other people required more effort than I thought I could give, but every time it pulled me out of that mindset, at least for a while.

4) It educates you

I can honestly say that I have learned more useful things about endometriosis from other people with it than I have from any doctor.  I’m not suggesting skipping the doctor by any means, but there are so many things you can learn from fellow endo-havers.  For example, which doctors in your area and rude and which are compassionate?  Where can you find the cheapest TENS machine?  Which hospital has a better emergency department routine for really bad flare-ups?  Should you go to the doctor if X, Y or Z is happening, or is it normal?

5) They can advocate for you

I discussed here how I seem to get better results out of hospitals when my husband is with me.  It is so hard to be strong and argue for yourself when you are in screaming agony, so having someone with you at the hospital, at the doctor, or even just in public, who understands you and can state your case or make your excuses and get you a quick exit, is so helpful.  They can also recommend other supports for you and hook you up with specialists you may need to see, such as pelvic physios.

6) They can help you

If your supports are in person, they may be such wonderful human beings as to be willing to drive you somewhere when you can’t make it, help you tidy up your kitchen when it’s a week deep in takeaway containers, or walk your dog for you because you can’t do it, but also can’t stretch to a professional.  Or, they can just come and spend time with you.  That’s helpful too.

7) They can lift you out of darkness

This is a big one, and separate from the loneliness issue I mentioned above.  You can still be really gloomy when surrounded by people, because this is a pretty-gloom inducing disease.  People who know and love you, however, know how to punch through that crusty shell of unhappiness and get you in a good mood again, however temporarily.  They know the things that make you laugh, and they’ll say or do them.  They also bring you ice-cream.

8) They give you a place to vent

Most doctors don’t want to hear us bang on about the failings of the medical system.  Having a network of people you trust lets you have a vent.  It’s not necessarily an attempt to solve or change anything – sometimes you just need to get those feelings out and be heard.  A support group lets you do that.

9) They help you understand yourself better

One thing that my support group of other endo people has done really well is to help me understand how lucky I am.  I know that sounds weird and I’m not suggesting that my condition isn’t bad or that my pain is trivial.  However, I look around at women who have already had total hysterectomies and are still in so much pain that a good day is one where they can stand up and walk a few metres, and I realise how lucky I am that my good and bad days are so very different.  It has also helped me be stronger, because I am inspired by the people who are even stronger, more hopeful and more positive than me under far worse conditions.

10) They let you help other people

One thing that it is super hard to do when you have endometriosis is to help other people.  It’s hard to give to charity when your available income is going straight to your GP and chemist.  You can’t help your friends move house if you are in the middle of a flare-up.  However, by joining and being active in a support group you can help educate and assist those who have just been diagnosed and are looking for help and advice to start their journey, just as you once were.  It’s a rewarding way of giving back, and each person joining and contributing hopefully makes things that much easier for the next.

 

Please stay tuned for my next post about the types of support groups you can have and how they can help.

Do you have a support group that you just couldn’t do without?  How did you find them, and how have they helped you?  Let me know in the comments below!