CW: chronic pain, suicide Other Australians may have seen an advert by Lifeline cropping up on our bus shelters, billboards and other media over the past few months. I have a big problem with this… More
Another month has passed astonishingly fast, and it’s that time again – a monthly gratitude post.
Not going to lie, April has been super hard, and so finding things to be grateful about has been trickier than usual. I haven’t really had any spectacular lows, but it’s felt like I’ve been in a constant slump. I’ve had a number of sick days, and had a really bad experience with my last Prostap injection (a painful infection at the injection site and ongoing struggles with the side-effects). The ongoing pressure of the adenomyosis and the general malaise and lack of hope that comes with chronic pain has been exceptionally hard to deal with.
However, I made a commitment to be more grateful and positive this year, and these posts force me to consider the good things in my life, so let’s go.
I wrote about what Easter means to me as a chronically ill Christian, so I hope I’m not cheating by mentioning it again. There are plenty of reasons to be grateful for it, though. A four-day weekend (followed shortly by ANZAC Day), lots of chocolate, and, of course, the celebration of Jesus’ sacrifice that means an afterlife in paradise. That’s always good.
2) Girl’s night
I got a chance to spend the evening with my four best girls. We are a diverse group in both personalities and backgrounds, but we still have plenty in common – enough that we have stayed friends for ten years during the most turbulent times of our lives. Perhaps our greatest commonality is our love of great food, which we ate at tonne of. One of this fabulous group is from Bangladesh, and boy, does her mum create the most amazing feasts ever. I could LIVE off her dahl. Her spinach is mind-blowingly good. She is single-handedly responsible for making me like cauliflower.
Sure, it was incredibly high FODMAP and I was in agony the next day, and I accidentally ate a chilli, but it was entirely worth it. And now I’m craving her spinach. Damn it.
Also, the chance to see my four wonderful best friends is always so good. Everyone should have that friend or group of friends that they love and trust and always feel incredibly happy to see, even when life is hard or you don’t want to socialise. This is that group. There is no feeling in the world like spending time with my girls.
3) ANZAC Day
I may be pretty anti-violence, but I am not against people standing up to invaders. I can also appreciate the courage, heroism and comradeship displayed by the ANZACS and the other soldiers of WW1. Can you imagine how terrifying it would be to suddenly see a tank coming over the horizon in a war where cavalry with swords were still in common usage? Can you imagine the mud, the blood, the terror, the cold in winter and the searing heat in summer, the disease, the privation and the utter uncertainty? I don’t think war is something to celebrate, but the qualities of the soldiers who fought are, and their deaths should be remembered and commemorated. I am grateful for what they did to ensure that we won the war.
4) An income
In the last month I’ve seen a lot of articles and the like on the difficulties of people with chronic illnesses who also have to deal with a low income or poverty. This one in particular tugged at my heartstrings. Australia has a good social security system compared to some countries, but as a lawyer I heard a lot of stories about people struggling with bureaucracy and a lack of understanding of the nuances of their condition. I am incredibly grateful that I don’t have to battle for Centrelink, or try and live on the amount dispensed. A stable income, having enough left in your pay after the necessities to save or give to charity – these are privileges that cannot be underestimated.
5) Changing leaves
As I wrote last month, I love autumn. I’m enjoying the cooler weather still, although I’m not thrilled with some of the very cold mornings. What I am loving this month is the beautiful autumn colours as the leaves change from green to shades of gold and red. Some of the older suburbs with the European trees are just incredibly beautiful in autumn. It was a particularly big shock for me when I took a week off sick at work to go from driving down the street my office is on and seeing it go from a green tunnel to suddenly almost bare, with the road covered in golden drifts of leaves. I also really love the smell of autumn leaves as they break down. It’s so earthy and rich.
During April I took advantage of a Fernwood sale and bought myself a membership with some personal training. My PT, Emily, is really fun and works me within my limits, but doesn’t let me slack off. I’m really exciting to be getting my fitness back on track, and have been taking on some additional exercise as well (I swam a kilometre for fun the other day!). I’m doing almost an hour of warm-up before my sessions, and it is really, really relaxing for the brain. I can just focus on my body and making it work. It’s great mindfulness.
I also really enjoy feeling exhausted and sore for a good reason, as opposed to just feeling exhausted and sore because disease. It’s satisfying and makes me feel proud of my achievements. I’m not losing any obvious weight (thanks menopause!) but I am feeling my muscles harden up and I have a little bitty line on my biceps that looks like it could be a muscle.
7) Vegan smoked salmon
Since going vegan, people often ask me if I miss meat. Generally speaking, no. Sure, I enjoyed bacon and rissoles, but I never really got excited about steaks or chicken. I genuinely do enjoy the taste and texture of fake meats better in 99% of cases. However, I loved fish. I definitely didn’t give up eating fish because I hated the taste. Gardein Fishless Fillets filled a big gap for me, but I really, really missed smoked salmon. Thankfully, the Cruelty Free Shop has started carrying Sophie’s Kitchen Vegan Smoked Salmon. It’s not a perfect replica but it is very close and soooo tasty. I had so many slices of toast with Tofutti cream cheese and some chives. Heaven. Happy little vegan.
8) Macaron adventures
Disclaimer: the macarons in the picture above are not mine. Mine only vaguely resembled macarons.
Pictured above: attempts one and two. They tasted fine. I’ve never tasted macarons before, vegan or otherwise, so I have no point of reference, but these were nice, with a light marzipan flavour. I definitely need to have another crack and try and get them better, but I think eventually I’ll get it.
I baked them with my sister and it was a bit of a giggle. It took us HOURS and she managed to turn our sugar syrup into a solid rock, but I enjoyed it, even if it was incredibly frustrating to put in all that work and just get explosions.
This is the recipe I used. On my second batch I turned the oven down to 250F and it worked much better. I’ll keep playing and let you know if I ever manage it.
9) Love Nikki
If you play mobile games with pop-up ads you have probably seen some for Love Nikki. It’s basically like Pokemon but for fashion. Your character, Nikki, is inexplicably transported to another world with her cat, Momo, and ends up in a bunch of styling contests. The game has a bunch of content and paying players definitely have a big advantage, but even my cheap self who just plays the free version can get heaps out of it.
It may seem like a silly thing to be grateful for, but it’s another thing I can do for fun when I’m really sick and stuck in bed. Apps are great for the chronically ill. Plus, I really like anime and pretty clothes, so this ticks all the boxes. Let me know in the comments if you’d like a more in-depth review.
10) Sex Education
I don’t mean the school lessons – mine were patchy and weird at best. Highlights included being told repeatedly to just “keep your pants on!” in a strong US accent, and pictures of diseased genitalia. That’s a Christian school vs a public school for you, I suppose. Both freakish and not particular useful, just in very different ways.
What I am actually referring to is the Netflix show, Sex Education, starring Asa Butterfield (you may recognise him as the titular character of Ender’s Game). Whilst this show does have more sex scenes than I really want to see (probably unsurprising, given the name), it also deals really, really well with some very real issues – poverty, abandonment, over-protective parents, divorce, sexual trauma, abortion, vaginismus, slut-shaming, parental pressure, revenge porn, stigma against virginity, stalking, drugs, homosexuality (both repressed and flambouyant) and the attendant prejudice and danger, and a raft of others. The characters are engaging – some are deeply loveable, some are deeply tragic, and it is just incredibly well-written. If you don’t mind a whole bunch of nudity and want a show that really tugs the heart-strings, this is a good one for you. I was hooked. I am not kidding when I say I laughed, I cried, and I determined to teach my hypothetical future children strong lessons about their self-worth and ensure that they get proper sex education.
Last week I shared some quotable quotes I found on Pinterest about life with chronic illness. Visitors to my Pinterest board, however, will also see more than just funnies and sads. I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself. I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something. Because this post is very long, I’ve split it into two groups of 5.
Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is. Just skip the descriptions if you don’t need them.
1) A pain scale we can all understand
With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).
“10 – Unable to Move – I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.
9 – Severe – My pain is all that I can think about. I can barely talk or move because of the pain.
8 – Intense. My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.
7 – Unmanageable. I am in pain all the time. It keeps me from doing most activities.
6 – Distressing – I think about my pain all of the time. I give up many activities because of my pain.
5 – Distracting – I think about my pain most of the time. I cannot do some of the activities I need to do each day because of the pain.
4 – Moderate – I am constantly aware of my pain but I can continue most activities.
3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.
2 – Mild – I have a low level of pain. I am aware of my pain only when I pay attention to it.
1 – Minimal – My pain is hardly noticeable.
0 – No pain – I have no pain.”
I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?” My 10 is not the same as another person’s 10. It doesn’t convey the actual effect of the pain on my body. It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale. And is the scale linear or logarithmic? HOW DOES IT WORK?
Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own. You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.
In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating. Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5. My face doesn’t crack, my posture doesn’t slump. I carry that through to hospital, where I am quiet and calm externally even though I can barely think. I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me. I can fall asleep despite really bad pain, because pain is very exhausting. I know that it consequently reads as me exaggerating when I say that my pain is an 8. Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.
Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?
2) What being able to work really means
A tumblr thread that reads:
mmmyoursquid: |People love to talk about whether or not disabled people can work
but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)
Dead silence. Nobody cares.”
eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.
chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.
Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.
mmmyoursquid: “reblog bc the non activities thing seems really important words.”
I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person. On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering. Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it). If I’m having a period of real wellness, I will join my husband in a daily dog walk.
Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries. Basic household stuff. If I want to have a shower or bath, I’m definitely not walking the dog. The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards. I tend to only socialise on long weekends or when I’m having a really, really good week.
I am lucky. I have more “useable hours” than many people. However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed. It baffles me that other people use their after work hours for more than resting and watching Star Trek. Health and vigour seem like wonderful things. I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day. Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture. The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.
3) Changed lives
Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it. I was walking a specific path that got 130% re-routed when I got sick. And it feels like I’m in this bizarre, alternate, half baked version of my real life. And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led. Who would I have been? What could I have been? We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”
I think this is a really good way of explaining to people why chronic illness makes you sad. You are in mourning for the person you could have been, or thought you were going to be. I think it can be a tricky concept to explain.
I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong. It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year. Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy. Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take. Would I be making a name for myself as a good advocate? Would children still be a distant one-day? Would I have been able to travel the world like my husband and I wanted?
4) The in-between
Image reads: “A chronic illness phenomenon
I think there’s this weird phenomenon in life, specifically in the chronic illness community. It’s a place some of us get stuck in – the in between. A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world. You almost faint but you don’t. You’re always in pain it’s relatively tolerable. You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time. Your heart rate is too high to be normal but not high enough to be critical. Your BP is low but not THAT low. You try to find answers but seem relatively okay to doctors so they don’t want to run more tests. You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”
This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything. This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with. This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.
I’ve been in the in-between – I live there, I think – and it just sucks.
5) It is more than pain
Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.
Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this? I think this little post does it pretty well. I don’t think people get that it is sooo much more than just pain. I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function. Fatigue is the biggest one. I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late. I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being. I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed. Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas. I couldn’t go to court or see clients, of course.
Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it. In the meantime, I think this little tumblr post does a very good job.
I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.
Stay tuned for Part 2.
CW: It’s an Easter post. It inevitably talks about religion, suffering and death.
I’ve written before about my faith, but today I want to talk about why Easter specifically matters to me so much as a chronically ill person.
(Before I jump into it, a quick note on the cover photo for today, which is a person in a giant rabbit costume staring out over a shadowed landscape under a cloudy sky. I have absolutely no idea what possessed someone to take this photo. It is not quite the crosses-on-the-hill image I was looking for, but it is so strange I couldn’t help but use it. I love it. I have so many questions.)
To any of my readers who have somehow escaped hearing what Easter is in the Christian calendar, it is the celebration of Jesus’ death on the cross and his resurrection three days later. In Christian canon, Jesus is the sinless son of God in human form, with all human frailties and weaknesses, who experienced the full range of human emotion and physical pain. He began his ministry and around 30, and was eventually put on trial and killed after stirring up a whole lot of trouble amongst conservative Jewish elders, mostly by calling them hypocrites who cared more about the appearance of holiness than actual connection with God, and doing forbidden things like hanging out with prostitutes and healing people on the Sabbath. After being beaten, humiliated, whipped, crucified and stabbed, he died, was buried in a tomb with a big old rock in front of it, went to hell for a few days, then rose again and did some more preaching before ascending to heaven to sit at the right hand of God.
Here are some of the things from the Easter story that stick with me more than ever as a permanently sick person:
1) Jesus knows what I am going through
As noted above, the idea that Jesus became fully human means that he experienced hope, despair, exhaustion, frustration and disappointment just as I do. He also experienced fear, and a desire to not have to go through with more pain and suffering. In the garden at Gethsemane, when he was praying prior to his arrest, he begged the Lord to “take this cup away from me.” I know exactly what it is like to ask that question. I don’t know what is coming in my future as clearly as Jesus did, but I know that there is likely to be more bad stuff. Jesus has felt that and asked for it to be taken from him. There’s no shame in me doing it.
He also experienced unimaginable agony. Endometriosis has sometimes made me feel like there is a monster tearing my uterus apart from the inside, but I’ve never been whipped, starved (except for colonoscopies, but that is different), refused any liquid but vinegar, and hung on a cross for hours, which historians tell us is a truly horrific way to die. Jesus knew pain. He knew how it feels like it will never end, like you can’t go on, like there is nothing but that pain. He understands intimately how I feel when my pain is bad.
2) Jesus didn’t get better either
Ok, I know that sounds weird, but hear me out. Sure, Jesus may not have had a chronic illness, but from the moment his trial began and the pain started, there was no respite. He did not get a break from pain and privation. His pain ended only with his death (and then he went to hell, so he probably got a whole new kind of pain there).
Now, that may sound really bleak, but it is a lot less frustrating and a lot more realistic to me than people saying, “This too will pass.” The whole point of chronic pain is that it doesn’t pass. Sometimes, we just endure it until we die. However, when it doesn’t we sometimes feel as if we are doing something wrong, or worse, get treated as if we are. I’ve written before about how Christians will sometimes treat other Christians as if their ongoing illness is somehow evidence of sin. But there was no relief for Jesus, the man who never sinned, so I’m not doing something wrong by failing to be healed.
In this lifetime, it didn’t pass for Jesus, and it may not pass for me. But, that’s ok, because…
3) It does get better after that
This is probably where I’m losing the non-religious folks, because I can understand how anything “after death” can sound a bit wacky to people who believe you die and that’s it. The big promise of Easter, though, is that we don’t die and that’s it. We die and are reborn in heaven. We don’t suffer any more. We experience such incredible joy that it is as if we have never suffered. I used this CS Lewis quote in my last article, but I’m going to use it again here because it sums it up so well:
That is what mortals misunderstand. They say of some temporal suffering, “No future bliss can make up for it,” not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory. ..And that is why, at the end of all things, when the sun rises here…the Blessed will say “We have never lived anywhere except in Heaven.
Because of Jesus, my place in heaven is guaranteed and I will one day have healing that will make my pain-free days on earth look like poo. I will be healthy again. I will know peace and energy and absolute, perfect love.
4) I’m worthy as I am
Jesus wasn’t crucified alone. Two actual criminals – thieves – were hung on either side of him. One of them turned to Jesus and said, “remember me when you come into your kingdom.” Jesus replied, “Today you will be with me in paradise.”
Now, I’m no angel, but I don’t steal things. I’ve never been convicted of a crime. I’m not an adulterer. Jesus forgave people who were. He will and constantly does forgive me.
I’m being a little long-winded about this, but bear with me. In this world, we have to do a lot of things to be accepted – to be viewed as worthy. The chronically ill are often told that they aren’t good enough, or aren’t trying hard enough. Spiritually, though, none of us are – all have sinned and fallen short of the glory of God, after all – but Jesus doesn’t care. He loves me and thinks I am just as worthy as any more able-bodied person. His forgiveness grants me a place in heaven regardless of whether I meet society’s standards of what constitutes worthy or not.
Do any of my Christian readers have a different take on the Easter story, or get a different kind of comfort from it? For all my readers – join me in being so damn grateful for a four-day weekend, plus ANZAC Day later this week! I loved stacked public holidays.
A while ago I did a post on 10 quotes that really summed up some of the experiences we have with endometriosis/chronic illness. Recently, a lot of similar quotes have been popping up in my Pinterest feed, so I thought this might be a good time to do another one of those posts.
1) “When I finally find a pain-free position…but then I have to pee.”
The quote is superimposed on an image of James Van Der Beek ugly-crying.
This one doesn’t really need an explanation, but boy, is it true (and frustrating).
2) “Fake it til you make it doesn’t work with chronic illness”
Image is a tumblr post by thatchronicfeeling. It reads:
“‘Fake it till you make it’ dosen’t work with chronic illness.
Instead, the options are:
‘Fake it till you are so ill you can’t get out of bed’
‘Fake it till you have a flare’
‘Fake it till you have a flare, continue to fake it till you’re hospitalised’
‘Accept that you have one or more chronic illnesses, adapt accordingly and look after yourself.'”
I suspect most of us are guilty of trying to fake it til we make it far too many times, largely because there are enormous societal and economic pressures to do so, even though we know it doesn’t work and isn’t conducive to long-term health.
3) The Most Annoying Thing
Image reads: “The thing that kills me about chronic illness is that you can do everything right and still be sick. You can be on the best medications, eat the best food, exercise seven days a week, sleep eight hours every night, and still be sick. You can follow every rule, do everything your [sic] supposed to, and still be sick.”
You’re telling me. I flew halfway around the planet to get the best surgery currently available only to discover I have another underlying condition that the surgery can’t treat. I sleep ten or twelve hours some days and I’m still fatigued beyond enduring.
On the other hand, I did go to my Bangladeshi friend’s house the other night and eat all the high-FODMAP food, but honestly, if you could taste her mum’s dahl, you’d eat it if it killed you.
4) Of Mice and Men
Image is a quote from Of Mice and Men: “It’s just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I’m physically able to do.”
This really hits home. As I write I’m supposed to be at beautiful Pearl Beach catching up with a dear friend whom I don’t see nearly enough. Instead, I’m at home in my pjs because I couldn’t handle the journey.
5) I want to be enough
Image reads: As a chronically ill person, I don’t want to be told I can do anything if I put my mind to it. I want to know that what I can do is enough.”
Absolutely. It doesn’t matter how determined I am to be a prima ballerina when I can barely make it to the gym twice a week through fatigue and pain. Rather than being told “you can do anything!”, which kind of rubs it in our faces that we can’t, tell us that we are doing really well as we are (because we are).
Meme of a cat face on a background partitioned into six shades of blue. Texts reads:
“Me: so what are we going to do with my life?
Body: It’s a surprise!”
It sure it, body. It sure is.
7) Waste of spoons
Image reads: Why waste spoons on shaving your legs?
I’ve had many a day in between laser sessions where I have thrown out my skirt or dress plans in favour of trousers because shaving requires far, far too many spoons.
If you can’t bear the sensation of leg hair want to know more about removal options, have a squiz at this post where I evaluate the pros and cons of a few different choices.
8) Competing Desires
Image reads: I am a person who wants to do a lot of things trapped in a body of a person who wants to sleep a lot.
Never a truer word was said.
9) A Fully Functioning Body
Image is a tumblr post by thefairiegirl. It is a picture of a shocked lego-person in glasses with the text:
“When I see someone with a fully functioning body:”
and the lego person says, “I’ve always wanted one of those.”
Wouldn’t it be nice?
Image is from someecards. A vintage image of a lady in a bathtub on a blue background, with text that reads: “You don’t know what fatigue is until you’ve had to rest after taking a shower.”
I mostly take baths now for that exact reason, and I still have to rest afterwards.
What quote resonates with you the most?
If you enjoyed this post and want to see more of these quotes, follow me at https://www.pinterest.com.au/bubblesinthebrain/ and look for my Endometriosis board.
Massive CW for fertility, pregnancy, hysterectomy.
Brace yourselves, kids. This one’s getting personal.
As you may know from recent posts, my formerly tentative diagnosis of adenomyosis is now officially confirmed. Unlike my endo, which showed up on precisely no scans ever, my adeno showed up loud and proud at the top of my uterus on an MRI.
I’ve talked before about what adenomyosis is and how it differs from endometriosis. The biggest difference for many is that adenomyosis can be cured by a hysterectomy, which endometriosis cannot. That’s kind of what I’m getting at with this post, but also not. It’s the results of that dissimilarity that has been the biggest difference for me. For the first time, I’ve had to think really seriously about what I want from my future.
I’ve flirted with the idea of children before. I mean, I am married, and in my late twenties, so it is something that many people would assume is the next natural step for me. I’ve kind of always assumed I would end up with children, because it’s what you do, right? You grow up, you meet a nice boy, you get married, you have two and a half children and a white picket fence. The circle of life, etc. At the same time, however, I have never been overly maternal. I don’t get clucky when I see a baby. I’m not all get-it-away-from-me – I can hold them competently enough, and I can entertain children for a few hours (it literally used to be my job, after all), but I never really felt the need to have one myself. Add to that the fact that there are so many children in need of a good home, that our planet’s population is increasing at a rapid pace, that I could potentially pass these awful diseases onto a daughter, and that I really resent the idea of taking yet another hit to my career and to my body when both have already had to endure a great deal, and children just never became an immediate priority.
There’s also the fact that I’m terrified of pregnancy and childbirth. It looks hard. It makes your ribcage expand. All these awful words like “episiotomy” and “tearing” get tossed around. The thought of losing bowel control in front of a bunch of strangers, and worse, in front of my husband, also doesn’t appeal. It’s undignified and painful, and I’ve had enough of both.
But now I have adeno.
As long as I had endometriosis I knew that I would have to make a decision on the topic at some point, because endometriosis *may* have an impact on my fertility. My original plan of leaving it to my thirties was not one that various doctors have encouraged. Still, I assumed I had time, and that at some point down the track some sort of maternal instinct might kick in, or I might at least feel a bit ready. It hasn’t to date.
With adeno, however, suddenly the possibility of an outright cure is being dangled in front of my nose like a very shiny carrot. One operation – albiet a serious one – and my pain could be gone. My endometriosis is being managed so well by Dr Edi-Osagie that for the first time in years, the prospect of a fully pain-free life seems within my grasp.
Of course, if I have a hysterectomy, then it is bye-bye to the prospect of biological children. Yes, adoption is an option, but let’s not pretend that it is easy, cheap or inevitable (multiple chronic illnesses tend to count against you in the assessment process, I do believe). So now I have yet another of those awful choices that endo and adeno leave you with – do I endure the pain for longer, and potentially experience more when my contraceptive devices are removed, in the hope of conceiving a child, or do I jump at the chance of a cure right now and lose the choice forever?
If I chose the first option, how long do I wait? I always wanted to be financially stable before bringing a child into the world, and I’m not badly off, but I’m not where I would ideally like to be. I wanted to be further into my career. I wanted to have travelled more. I wanted to do a lot of things that endo has prevented me from doing, but that a child will also make more difficult. I wanted to feel more ready, more sure. It’s such a big decision – is it fair for me to be making it with even the slightest doubt in mind? What do you do when you have doubts about either option?
Is it fair of me to put my husband through this? I’m already a bit of a burden at times (many times). My pregnancy could be really difficult and make it even harder on him. He’s self-employed where as I have a stable income – there’ll be an additional financial pressure on him. If I do successfully carry to term – let’s not forget that miscarriage is a heightened risk for women with endo – will I be able to recover from the birth easily, or will my health struggle like it does with everything else?
What if I’m a terrible mother and my child grows up to be an incel or something?
Ok, I’m less worried about that last one.
On the flip side, I don’t know if I’m ready to lose that choice. When I bake a cake or read a great book or see a fantastic movie, I think, “I want to share this with a child someday. I want this to change them the way it has changed me.” I want to share these things with a younger generation, and it’s at the moment it’s not likely I’ll get to do that in a “cool aunt” capacity.
Either way, it is a huge decision, and I’m wrestling massively. I think I have decided, but I keep flip-flopping. Whatever I end up doing, though, I resent the adenomyosis for forcing me to make this decision before I am ready. I resent the endometriosis for stealing away my chance of doing all the things I wanted to do as a young married couple before I had children. I resent that being a chronically ill woman is littered with such awfully difficult choices.
Have any of my readers faced this decision? Were you ambivalent about children? What were your thought processes? I am so keen to hear from anyone in a similar situation.
Yes, it’s April now, but too bad, you’re going to hear what I was grateful for in March anyway. Suck it up. Be grateful.
1) I went to Melbourne for the first time
Yes, I am one of those Australia-dwellers who had never actually been to Melbourne. For non-Australians, there is this ongoing rivalry between our two biggest cities, Sydney (New South Wales) and Melbourne (Victoria) about which one is better. Both have lots of nice old buildings, stacks of traffic, and road rules that make it very difficult for visitors to have a clue what’s going on.
To be honest, I wasn’t that impressed with Melbourne as a city (heresy, I know). It’s not really that different from other big cities to me. I just don’t like cities that much. However, I did get to see one of my best friends whom I haven’t seen in ages, drink a zingy bubble tea, attend an interesting seminar, and try Lord of the Fries for the first time (very tasty).
2) I saw Julie Bishop
I went to a very interesting seminar at which Australia’s recently resigned Foreign Minister, Julie Bishop, was speaking. Love or loathe the Liberal Party and its members, I think Julie Bishop is a very impressive, articulate and well-informed woman who has been a bit of a trailblazer in an arena still very much dominated by men. She also has some amazing clothes. It was a privilege to get to hear her speak in person and I was very interested to hear her views.
3) I made a cake
I love baking and cooking, but they can be difficult for me, because standing for long periods is a huge trigger for my pain. This one is pretty quick and easy, though, and it was a big hit at work!
I made two six-inch cakes instead of one eight-inch cake, and layered strawberry jam, fresh strawberries, and Sarah Kidd’s delicious cream cheese buttercream between them and on the top. I still have stacks of buttercream left over, so I’m going to make some cupcakes for next week and continue to buy the love of my coworkers with delicious vegan baking.
4) I went to a cafe and there were millions of dogs
It was a brunch, and the food was very tasty, but the DOGS. There was a tiny dachshund puppy in a wrap like a baby, with the softest head I have ever touched. There was a huge lollopy smiley golden retreiver. There was a beautiful sleek black greyhound called Jazz, who wanted lots of strokes. There was a bear that the owners tried to pass off as a St Bernard. It had paws the size of my face, and I have a fairly average-sized face for a 178cm human. There was a pitbull with a smile that lit up the whole day. Basically, it was heaven. There was cake and dogs. What more could you possibly want?
5) The weather got colder
It’s no secret that I love spring, but I also adore autumn. Summer in Australia is just too hot for a pasty white child like me. I sweat and I crisp up at the edges, and the backs of my legs stick to chairs. I don’t like it. Autumn, for the two weeks it seems to last in Australia, has days in that perfect 18-25 degree range, with enough sunshine to boost the spirit and enough grey rainy days to let a girl cuddle up under a soft cushiony duvet with an animal and her husband. Perfect.
6) I learned some salsa
Thursday 21 March was Harmony Day in Australia, a day about celebrating multiculturalism. As part of it, my workplace hosted a salsa class.
A bunch of corporate types trying to salsa in suits will always be good value, but the class itself was just clean good fun. Was it good for my endo? Not even slightly. Did I have a slightly sweaty blast and get some good cardio and strength work in? Sure did!
7) One perfect rose
I’m a big fan of the poetry of Dorothy Parker. She wrote a poem called “One Perfect Rose.” It goes:
A single flow’r he sent me, since we met.
All tenderly his messenger he chose;
Deep-hearted, pure, with scented dew still wet–
One perfect rose.
I knew the language of the floweret;
“My fragile leaves,” it said, “his heart enclose.”
Love long has taken for his amulet
One perfect rose.
Why is it no one ever sent me yet
One perfect limousine, do you suppose?
Ah no, it’s always just my luck to get
One perfect rose.
Well, from my garden in March came one perfect rose, and it made me very happy. Unfortunately, I cannot seem to get this picture off my phone and into this post for the life of me, so, if you want to see it, along with pictures of random flowers that make me happy and many pictures of corgis, cats and wigs, have a look at my instagram, @offbalancespinningtop.
8) Dinner with my friend
Despite living in the same city as her, I don’t get to see one of my friends nearly as often as I’d like. However, we started the month with dinner together and I love spending time with her so much. She is the sweetest, kindest person and just makes everything better.
9) Youtube Fun
I spent a fair amount of time on youtube in March. Possibly more than was healthy. Anyway, I had a great deal of fun binge-watching Safiya Nygaard’s videos. She’s just so fun and happy and does such wacky stuff, and she bawled like crazy when she got engaged, which made me happy-cry. A good time all round.
10) Queer Eye Season 3!
I love Queer Eye. It is so heart-warming and Tan France’s hair is an international treasure. The fact that Season 3 has come makes my little heart sing. My favourite episode was Black Magic, in which Jess, adopted and then rejected when she was outed as a lesbian to her conservative family, learns how to trust and love again, as well as getting in touch with both her sister and her own identity as a black woman.
There was a very disconcerting episode in which a very tall man shaved off the nice beard Jonathan Van Ness had carefully given him. I was in shock.
Do you watch Queer Eye? What was your favourite episode in Season 3? What made you happy in March? Let me know in the comments!
This post is spectacularly late! I’m sorry for the long gap between posts – I’ve been really struggling with sickness and pain management recently and it has left me with no spoons for writing. I’ve been struggling with trying to get the balance of my latest medication (Prostap) right, and have had my tentative diagnosis of adenomyosis confirmed by MRI. I have a lot of half-finished drafts sitting there, but I’m going to kick things off with my collation of daily quotes that I used during March.
Kindness is a big theme in my life – not because I always manage it, but because I always want to be kinder than I am. There are so many things to be kind to in this world – yourself, other people, animals, the planet, people you love and people you hate. To me it is vitally important. My biggest failing in trying to achieve kindness is my tendency to gossip. Sure, I’m not criticising someone to their face so arguably it can’t hurt them, but I think being kind in that kind of consequence-free environment is a far greater mark of character than refraining from being unkind to people face-to-face, where the fear of repercussions is greater. Also, do unto others, etc. I’m working on it, but I still find myself doing it a lot.
I also really suck at being kind to myself sometimes – don’t we all – and that’s an area I’m doing my darndest to work on. As part of that, I’ve recently joined a gym (Fernwood finally seduced me with their persistence and a good deal on price) and am having some PT sessions to get my body back on track without hurting myself (or at least, without hurting my endo. My muscles hate me right now).
I want to preface this by saying that I don’t agree without reservation with all of the quotes here, but generally speaking I think they all have a good message, and that some are incredibly important to remember.
Now, without further rambling:
- “No act of kindness, no matter how small, is ever wasted.” – Aesop
- “For beautiful eyes, look for the good in others; for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone.” – Audrey Hepburn
- “Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love.” – Lao Tzu
- “Goodness is about character – integrity, honesty, kindness, generosity, moral courage, and the like. More than anything else, it is about how we treat other people.” – Dennis Prager
- “A tree is known by its fruit; a man by his deeds. A good deed is never lost; he who sows courtesy reaps friendship, and he who plants kindness gathers love.” – Saint Basil
- “You cannot do a kindness too soon, for you never know how soon it will be too late.” – Ralph Waldo Emerson
- “I’ve been searching for a way to heal myself, and I’ve found that kindness is the best way.” – Lady Gaga
- “Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver.” – Barbara De Angelis
- “You can tell by the kindness of a dog how a human should behave.” – Captain Beefheart
- “Contact kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate.” – Albert Schweitzer
- “Just imagine how different the world could be if we all spoke to everyone with respect and kindness.” – Holly Branson
- “I have learned silence from the talkative, toleration from the intolerant, and kindness from the unkind; yet, strange, I am ungrateful to these teachers.” – Khalil Gibran.
- “Kindness is in our power, even when fondness is not.” – Samuel Johnson
- “Kindness is more important than wisdom, and the recognition of this is the beginning of wisdom.” – Theodore Isaac Rubin
- “Guard well within yourself that treasure, kindness. Know how to give without hesitation, how to lose without regret, how to acquire without meanness.” – George Sand
- “I make mistakes daily, letting generalisations creep into my thoughts and negatively effect my behaviour. These mistakes have taught me that the first step to successfully choosing kindness is being more mindful about it, letting go of impatience and intolerance along the way.” – Daniel Lubetzky
- “The true greatness of a person, in my view, is evident in the way he or she treats those with whom courtesy and kindness are not required.” – Joseph B Wirthlin
- “Human kindness have never weakened the stamina or softened the fibre of a free people. A nation does not have to be cruel to be tough.” – Franklin D Roosevelt
- “Transparency, honesty, kindness, good stewardship, even humour, work in business at all times.” – Humphry Davy
- “The man who practices unselfishness, who is genuinely interested in the welfare of others, who feels it is a privilege to have the power to do a fellow creature a kindness – even though polished manners and a gracious presence may be absent – will be an elevating influence wherever he goes.” – Orison Swett Marden
- “Wherever there is a human being, there is an opportunity for kindness.” – Lucius Annaeus Seneca
- “Treat everyone with respect and kindness. Period. No exceptions.” – Kiana Tom
- “Every minute of every hour of every day you are making the world, just as you are making yourself, and you may as well do it with generosity and kindness and style.” – Rebecca Solnit
- “The best portion of a good man’s life is his little, nameless, unremembered acts of kindness and of love.” – William Wordsworth
- “You will never have a completely bad day if you show kindness at least once.” – Greg Henry Quin
- “Do things for people not because of who they are or what they do in return, but because of who you are.” – Harold S Kushner
- “Unexpected kindness is the most powerful, least costly, and most underrated agent of human change.” – Bob Kerney
- “Strong people don’t put others down…they lift them up.” – Michael P Watson
- “A candle loses nothing by lighting another candle.” – James Keller
- “Do not let kindness and truth leave you. Tie them around your neck as a reminder; write them deep within your heart.” – Proverbs 3:3
- “Consistent acts of kindness trump random acts of kindness.” – Anonymous
How have you tried to be kind to yourself or others this month? What about going forward? Let me know in the comments.
CW: maternity, weight gain, gendered language
I’ve written before about the difficulties of holding down a job whilst living with endo. Re-reading that post is an interesting experience. I was still in litigation, and specifically said that my health might force a move into policy – an area that, at the time, I had no interest in. Well, that prediction sadly came true, in part. My health did force me to leave litigation, but it turns out policy is actually pretty fun.
I’ve also written before about clothes that are comfy yet not terrible for when you have endo. I want to revisit that topic today, but with a work focus. I’m concentrating on offices here, partly because that is what I know and partly because many non-office careers either come with uniforms, dress codes or special requirements (steel-toe boots, for example).
If you want to look at some more adventurous office ideas, I highly recommend Miss Louie’s various lookbooks (see here and here ). She has so many great ideas on professional yet interesting outfits. If you need to travel for work, head over to this post by Vintage Barbie. I’d also recommend her post on maintaining your own style in a corporate world.
So, without further ado, here are my five office staples for the office worker with endo belly:
1) The well-fitted knickers
Ok, so this applies to literally any outfit, officey or otherwise, but it is so important. Whether you have endo or not, you generally want to avoid the dreaded Visible Panty Line (not terribly professional). It’s not always easy in a world that seems to sell an inordinate amount of cheeky-cut undies that have their leg at that annoying mid-point that just cuts your buttock right in half. If you have been even slightly blessed in the booty, this tends to cause a slight dimple and becomes very obvious under even moderately tight clothing. I also find that they cause me to be making adjustments all day. If you really love a halfway-up-the-butt cut, go for seamless ones that just lie on the buttock rather than gripping and digging in. Cuts that simply won’t cause those lines are G-string, or my personal fave, the granny pants, that cover the entire buttock. In theory, boyleg undies shouldn’t do it either, but boyleg appears to mean different things to different brands and for many, still somehow results in a cheeky cut. If someone has a recommendation for boyleg undies, with, you know, actual legs, please let me know in the comments. I just want boxer briefs for people with nothing between the legs. They look so comfy!
In terms of fitting for endo, you want something that is gentle on the tum. For some, this means a very low cut that lands below the tummy. For others (like me), this means a high cut with a gentle waistband. I highly recommend keeping at least one pair of maternity knickers on hand for the really bad days. I’ve started wearing some maternity things and seriously, the comfort level is out of this world. Overall, my favourite brand has to be Bonds and their offshoot, Jockey, because they have a style for almost everyone.
Whatever style you choose, make sure you are getting the right size. Too big and you’ll be hoisting them up all day. Too small, and you’ll not only get VPL on both the legs and waistband, you’ll also be in a great deal of discomfort. Compression is the enemy of endo (another good reason to get fantastic knickers, as shapewear is not our friend). It is worth getting a few sizes if you often suffer endo-belly. A 12 is good for me most days, but on a flare day a 14 is just a bit more comfortable and accomodates that rapid expansion much better. Endo can also cause rapid weight changes – I’ve gained nearly two sizes in the past few months – so having bigger or smaller sizes on hand is an annoying necessity. If you gain weight, please don’t keep stuffing yourself into knickers that are too small. You’ll be horribly uncomfortable. It might be upsetting to have to accept that you have gained weight, but making yourself uncomfortable won’t help.
2) Elastic-waisted black trousers
Black trousers are a corporate essential. You can dress them down for casual Friday, but you can’t be caught short being insufficiently formal for a meeting or presentation. When I was in litigation I always had a pair of black trousers in my desk drawer just in case, after getting sent to court with very little warning wearing a skirt that was fine for a client-free day in the office but absolutely not ok for court.
I have multiple pairs of black trousers in a variety of styles – wide leg, boot cut, straight leg, high-waisted, etc – but the most important one in an endo-gal’s arsenal is a pair with an elastic waistband. They are so good on those days where a static waistband looks like Satan and you just want really just want comfort and a super easy outfit. I recently purchased this pair from Target, which don’t look superb in the website picture but look perfectly acceptable on and are very comfy. The only downside is that you can’t really tuck things into it, because the waistline does look a little cheap and, well, very obviously elasticised. That being said, I want another pair. One comment says that they are great for shorties, but they fit my 5’10” frame just fine as an ankle-grazing style. For $15, they are well worth it.
3) A stretch black pencil skirt
A black pencil skirt is, just like the black trousers, an office necessity. You can make it casual with a simple t-shirt and flats, or dressed up with a buttoned shirt or silky blouse. A pencil skirt is the most formal style of skirt, much as I love my flared midi-skirts. Thing is, of course, you don’t want just an elastic waist with such a clingy style – you want stretch EVERYWHERE. You don’t want it to be tight or compressing, either – you want one that just skims everything and sits comfortably. I recently got this one, also from Target, that fits the bill perfectly. It looks very smart, and doesn’t dig in at all. I wore it on a work trip to Melbourne that included flights, taxi rides, a seminar, walking all over the place, and Lord of the Fries. It doesn’t look terribly cheap, and it doesn’t look immediately like its a stretch fabric as opposed to an ordinary suit skirt. It’s a good length for me but would also be fine on a slightly shorter or taller person too.
4) Good tights
The holy grail of workwear for a skirt-wearing type. They hide a multitude of issues – dry patches or those little bits I miss when shaving – and just add a level of polish and sophistication. They also put a barrier between your foot and your shoe, which helps prolong the life of your shoes. They are required in many more conservative law firms if you wear a skirt, particularly if you appear in court.
They are a nuisance, though. Despite my extremely extensive wardrobe, I sometimes feel like I’ve spent more on tights than any other type of clothing. Thick ones are too warm in summer, but sheer ones rip at the drop of a hat. So many have built-in slimming, which is fun if you don’t have endo, I’m sure. I find those very painful.
However, there are tights out there that are both comfortable and not prone to laddering. I always look for tights that, when damaged, get holes rather than ladders. A hole just sits there. It doesn’t look great, but, unlike a ladder, it won’t start at your thigh and have ruined your entire leg by lunch time.
I also look for those with words like “comfort brief”, “wide waist-band” or “no dig”. If those fail me, maternity tights are always an option. I got a bunch of these Kayser tights on sale a few weeks ago, and they are saving my life (or at least my tum) at the moment. Very comfy, and they hole rather than ladder.
5) A slouchy blazer
I love a structured blazer. I feel amazing in a properly fitted suit jacket. Sometimes, though, everything hurts and you need to be able to flop in your chair and not feel constrained. For that, I love a looser, less structured blazer like Review’s Aries jacket, or a completely jersey blazer. I got one from Kmart that looks surprisingly professional when not covered in cat hair, but I can’t find it anywhere on their website.
This is less of a “must have” than the other things, but a jacket really does finish off an office outfit and is great for turning a casual outfit into an office-appropriate casual Friday outfit. Endo sufferers may not need a slouchy jacket, but I find that, when I’m having a really difficult day, pain-wise, being comfy everywhere makes a huge difference to my ability to tolerate it. A stiff jacket looks amazing but saps my spoons, so I feel that a relaxed blazer deserves a spot on this list.
Now, I realise this list sounds super boring. Basics usually are. To prove, though, that these pieces are important, I am going to do a week in the trousers and a week in the skirt, wearing them different ways, and including a slouchy jacket at least once in each week. As someone who spends 5 days a week in business or business casual, though, these basics are incredibly important to allowing me to get through the week with a minimum of pain and discomfort. I don’t need to rely on them every day, but having them there makes all the difference for those days when I am well enough to go to work, but only if everything else in my life is 100% easy and comfortable.
I’m planning a few more posts themes related to this. In addition to my proposed “comfy work clothes” lookbooks, I want to talk about about how I have coped with my sudden weight gain, and what I keep in my handbag and at my desk to make work easier for me when I’m struggling. Are there any other work, clothes or body-image-related posts you want to see?
Hi everyone. Sorry that it’s been so long since my last post – particularly unfortunate given that it is Endometriosis Awareness Month. I was struck down with a bout of gastro and writing was the last thing on my mind.
As part of Endometriosis Awareness Month, Buzzfeed has been running a series of articles raising awareness about endo. One of them is “Things You Shouldn’t Say to People with Endometriosis.” I’ve written on this before here, here and here, and given some suggestions about things to say instead here, so it’s always interesting to hear things other people are sick of hearing.
The Buzzfeed article, written by Lara Parker, is fairly tongue-in-cheek. She gives some brief explanations about why you shouldn’t say these things, but she also writes how she would like to respond when these questions are asked. It made me snicker.
Unfortunately, the responses on Buzzfeed’s facebook page and on the article were deeply disappointing, mostly from people who obviously do not get it and can’t be bothered to try, and even some from people with endo who apparently forget that we are allowed to be a little bit upset and annoyed about this horrific disease and people being arses about it.
People of colour in majority white societies have often noted the pressure to be the “perfect minority” – the model for all their race. If they do a wrong thing, it just goes to show that “all people of X race are like that”. I think there is a similar-but-different pressure on disabled and chronically ill people. Whilst we aren’t required to represent the whole demographic the way people of colour are, there is a pressure to be this “ideal” disabled person.
What does the ideal look like? Basically, inspiration porn. Preferably, they were able-bodied and had a promising future, but they lost something – usually their ability to walk – in a horrific accident. Doctors said they would never move again, but they regained use of their arms and took up Olympic paragliding, spouting mantras such as “the only disability is a bad attitude!” They overcome every obstacle that a world built for able-bodied people creates for them rather than asking that maybe the world undergo some reasonable adjustments. They are an inspiration to disabled people everywhere! They teach lessons about the power of positivity!
They are a stick used to beat disabled people who are tired, cranky, depressed, or whom able-bodied people don’t think are trying hard enough. “If they can do it, why can’t you?” And if a disabled person suggests that perhaps that isn’t actually the best attitude, we are rude, unhelpful, and bitter.
Here’s some examples of comments on the article:
“So you don’t want us to try and relate to you, or feel sorry for you? After what you wish we didn’t say, maybe add something saying what we SHOULD say. This is such a negative post.“
“This is a tad aggressive. I understand that it is frustrating to live with a chronic illness that has no cure and limited treatment options, but I think people suggesting options to help your pain is clearly out of trying to help ease your pain and out of caring. If you’re going to get that upset every time someone tries to offer you a helpful suggestion (even if it might not be helping) than you must have a terrible attitude. Especially regarding the questions of “can you have children with this condition?” I think it’s safe to say a person asking you this is probably trying to understand your condition and the implications of it. Sounds like the person who put this article together needs a therapist.“
“What a bitter way to look at the wolrd, I think a lot of times its our instinct to try and help people we care for. So even if I’m sure it’s been suggested to you, you have to look at it from positive angle, this person is suggesting something because they care about you and wants to help you. I have endo and while I know our journey is different, I can relate to all the suggestions but every time someone gives me one, as silly as it is, I can see in their eyes that all they want is to figure out how to make you feel better. How can you be so upset about that.“
“A tad aggressive…. I have a few unseen conditions too and if people offer some advice I simply say thank you or thanks I’ll look into it. No more no less….”
“Here’s a thought…. If you don’t want anyone to comment on your illness / problem, don’t bring it up to begin with. If you just keep it to yourself, like most people do with their health problems, others won’t have any reason to comment or suggest anything. Rather than get on here and bitch that people are suggesting things, just shut up all the way around and it will solve all your problems before they even have a chance to start.”
Here’s what I think able-bodied people who say this kind of thing don’t get: most of it. Possibly all of it. But specifically:
- That relating to us or feeling sorry for us is all well and good, but it doesn’t come in the form of suggesting we try yet another fad diet, or that we should be fine if we have this treatment because it worked for their cousin’s girlfriend.
- That sometimes we get sick of people making unsolicited suggestions and rude comments, or asking really personal questions, and we are allowed to be frustrated that people actually seem to think that this is ok.
- That this is not the same as aggression. Passive-aggression, perhaps, but like most people, we really have to be pushed to breaking point before we morph into some sort of were-beast and start tearing faces off.
- That the questions and comments stack up. We might be hurt or frustrated by a single question that, however well-intentioned, is invasive, rude or dismissive, but that when you get them all the time, it is hard to stay calm and patient.
- That intention is not the same as impact. Someone could care deeply about me and my pain, but if they are asking a string of really personal questions or insisting that I would be fine if I tried the keto diet, their intention doesn’t matter as much as the impact it is having. And surely, if they care, they would care about my feeling on the subject too?
- That we educate people about this all the time. We are generally happy to explain what endo is, if it is the right time and place. That doesn’t mean that we don’t get sick of having to do it again and again and again, or when someone starts demanding answers that a quick google search would provide when we just want to get on with our days.
- That we don’t tend to bring our problems up out of context, and when we do, we are either looking for a specific solution, should as flexible work hours, or explaining why we can’t do a thing. That doesn’t mean we want to be told to have a baby or a hysterectomy. Also, we can’t shut up and take opportunities to educate people.
- That endometriosis is utterly exhausting, physically and emotionally, and we cannot always be happy, positive, and polite. There are some days I can’t even speak to people without literally feeling the conversation draining me of energy, however much I love the other person and enjoy the topic of conversation.
What I’d really ask people to do this March is to listen to us. Listen when we say that things hurt or upset us, and listen to why. Even if you don’t get it, please respect it, and understand that it’s not an attack on your freedoms or your character. We’re just asking for a little bit of shush, or perhaps for you to say, “oh, that sounds awful,” and give us a hug or a nice cup of tea.
And don’t tell us to be more positive.
William Tecumseh Sherman (a general in the American Civil War, among other things), described courage as “a perfect sensibility of the measure of danger, and a mental willingness to endure it.” I think that’s a good, if slightly narrow definition, as it takes courage to face hardship, humiliation and pain just as much as danger. Either way, it’s a quality vital to the chronically ill. It takes courage to live every day with discomfort and sickness. That’s why it was my theme for February. Below are all the quotes I’ve written in my journal this month. My journal also helpfully inserted on of it’s own: “Life shrinks or expands in proportion with one’s courage” – Anais Nin.
I chose courage as the theme for February because I think we really start to need it now. The first rush of hope that comes with the new year has faded and we are faced with the reality of life going on, as it does. It can be a painful come-down from January, and I find myself needing a little bit of courage to push through it.
As with January and its theme of “hope“, I’ve tried for a range of quotes that capture a lot of different aspects of courage – what it means, how you get it, what it does, why it is important, and what things require it.
If you are wondering why the picture for this article is a handsome little black and white mouse on a luxurious red mouse-sofa, it is because that is my dear departed mouselet Napoleon, whose namesake was, whilst unfortunately French, undeniably brave. My little mousey Napoleon was also extremely brave, and though trying to take on my rats (at least ten times his size, in one case) was a perfectly reasonable move. He never actually managed to get them, and instead lived a life of luxury, got quite chubby, and died at the ripe old age of two and a half. He was adorable and I loved him.
- “Courage is rightly esteemed the first of human qualities…because it is the quality which guarantees all others.” – Winston Churchill
- “It requires more courage to suffer than to die.” – Napoleon Bonaparte
- “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” – Lao Tzu
- “Success is not final, fear is not fatal; it is the courage to continue that counts.” – Winston Churchill
- “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.'” – Eleanor Roosevelt
- “Courage, sacrifice, determination, commitment, toughness, heart, talent, guts. That’s what little girls are made of.” – Bethany Hamilton
- “Mistakes are always forgivable, if one has the courage to admit them.” – Bruce Lee
- “We don’t develop courage by being happy every day. We develop it by surviving difficult times and challenging adversity.” – Barbara de Angelis
- “Courage is what it takes to stand up and speak; courage is also what is takes to sit down and listen.” – Winston Churchill
- “It takes courage to grow up and become who you really are.” – e e cummings
- “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” – Reinhold Niebuhr
- “Efforts and courage are not enough with purpose and direction.” – John F Kennedy
- “Courage is grace under pressure.” – Ernest Hemingway
- “The greatest test of courage on earth is to bear defeat without losing heart.” – Robert Green Ingersoll
- “Only those who will risk going too far can possibly find out how far one can go.” – T. S. Eliot
- “One isn’t necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can’t be kind, true, merciful, generous or honest.” – Maya Angelou
- “Have the courage to say no. Have the courage to face the truth. Do the right thing because it is right. These are the magic keys to living your life with integrity.” – W. Clement Stone
- “From caring comes courage.” – Lao Tzu
- “Courage is contagious. When a brave man takes a stand, the spines of others are often stiffened.” – Billy Graham
- “The truth is: belonging starts with self-acceptance. Your level of belonging, in fact, can never be greater than your level of self-acceptance, because believing that you’re enough is what gives you the courage to be authentic, vulnerable and imperfect.” – Brene Brown
- “It took me realising that a broken heart has never actually killed anyone to find the courage to ask for what I want, in just about ever situation. That was part of my own growing up.” – Ginnifer Goodwin
- “Courage is not simply one of the virtues, but the form of every virtue at the testing point.” – C. S. Lewis
- “Amongst the qualities a hero should have, I would include determination, loyalty, courage, perseverance, patience, focus, intrepidity, and selflessness.” – Ricky Martin
- “I believe that my worth is not measured by what I do, by the honours that are bestowed upon me, or by material wealth that I might obtain. Instead, I am measured by the courage I show while standing for my beliefs, by the dedication I exhibit to ensure my word is good, and the resolve I undertake to establish my actions and deeds as honourable.” – Burgess Owens
- “Courageous people do not fear forgiving, for the sake of peace.” – Nelson Mandela
- “Daring to set boundaries is about having the courage to love ourselves, even when we risk disappointing others.” – Brene Brown
- “God grant me the courage not to give up what I think is right even though I think it is hopeless.” – Chester W. Nimitz
- “Have courage and be kind.” – Cinderella
The hardest part about this list is keeping it to just 28. There are so many things to be said on this theme. Do you have a favourite?
Stay brave, my friends. Come back next month for March’s theme: kindness.