[Journal] “At least”

“At least it’s not cancer.”

Last night I was talking to a fellow spoonie with MS. We were lamenting over the shitty things we’ve heard or had said to us because of our chronic conditions. The short of it, is that people can be generally awful when you’re someone with a disability, and so many seem entitled to comment on issues they know nothing about. One of the points that keeps echoing in my mind is the use of two very simple words – “at least”.

At least it’s not cancer. At least you got out of bed. At least the sun is shining.

We’ve all heard it. We’ve all used it, for better or worse. But I want to talk to you about why using that phrase in a very particular context makes Miss Abigail pissed off.

Now, this is a fickle thing, you see. The concept of “at least” isn’t inherently bad in and of itself. Hell, it’s a downright useful turn of phrase. My issue is the application of those two words when they’re used specifically to downplay someone else’s experience, especially if it’s a negative one. Let’s use the other day as an example:

I had a terrible day. I got diagnosed with serious asthma, from symptoms I had chalked down to other ME/CFS or Fibro issues for years. I got told I was the sort of person that died because that shit was undiagnosed and untreated. I was pretty freaked out. On top of that, I got my Fluvax and Pneumovax to try and avoid the pesky in hospital thing. I had a shitty reaction, my arm swelled up like a flesh-balloon (now picture that!) and I was in seriously unfair amounts of pain as my immune system collectively lost it’s cookies and freaked the hell out.

I came home rather defeated. The response I got from my mother was “Well, at least you got your shots.” The response I got from a friend was “At least you got out of the house”.

Now, both of these are true. I DID get my shots, and I DID very much get out of the house. But it also completely undermines the fact that I now have a skin-coloured noodle attached to my side, I feel like I’ve been in a game of dodgeball with a porcupine covered in Siracha sauce and I just wanted to talk. Instead of feeling like I had been heard, or having someone commiserate with me that, yeah, that’s actually a pretty shitty time, I instead felt like the people I spoke to overlooked the entire experience I had to focus on a positive.

The thing is though, I had seen the positive. I had lived through the positive. In fact, it was the positive that had entirely lead me to where I am. And at this point in time, that positive didn’t weigh up against the overall shittiness I was experiencing. So stuff sucked. Hard.

I hadn’t lost sight of the fact that I was now immunised. That’s awesome! I like not ending up in hospital for weeks, being poked and prodded. I like not dying, as a rule.

This is key here, though. This is the ‘downplay’ I mentioned a few paragraphs up, and it’s the tip of the iceberg. Rather than trying to understand from my perspective that the sum of my day might have been pretty terrible, they isolated my entire experience and downplayed it into one single point.

You see the issue?

Now, we’ve come to accept socially that, if someone’s having a shitty time, we should try to cheer them up. It’s one of the better parts of this human experience and I don’t want to shit on anyone who is genuinely trying, but we also need to talk.

What happens when the person you’re talking to is suffering from a lifelong or chronic illness? What happens when that person’s entire existence is changed by something out of their control? We would think it abhorrent to say to a mother “Oh, at least you can make a new baby” after she’s just miscarried, because we understand the weight of the situation. We couldn’t tell a father of two that “at least you still have one kid” after his eldest committed suicide.

Having a chronic illness is different in a few ways to those examples mentioned above, but mostly due to the way that our struggles, issues and shitty days occur over the course of a lifetime, not one event (which is not to say that those events don’t impact one’s entire life. Perhaps it’s not the best example, but you get the idea). It can be difficult as an outsider to understand quite the impact a chronic illness or disability can have on someone’s life, and I can’t speak for anyone else, but I know that in my case it has completely changed who I am as a person, for better or worse.

Almost every spoonie I’ve ever met has a shared experience. We’ve all had someone ask us what’s wrong with us now, we’ve gotten a diagnosis and tried to explain it, we’ve been having a challenging day and had an outburst, and without fail, someone will inevitably respond with “oh, well, at least it isn’t cancer”, “at least you’re still alive” or something equally inane.

To preface this next part, I’d like to note that this is written not in the spirit of being critical of those that do have, or have had, cancer, but moreso people unaffected by illness using it as a go-to reference point for ‘suffering’.

Downplaying someone’s existence into “well at least it’s not this other disease” is pretty awful, as things go. Oftentimes, cancer (as a broad term) is more understood than the varied conditions spoonies deal with. It doesn’t change the fact that, sure, they don’t have disease X, but what they’re dealing with is clearly upsetting to them and you’re blowing it off when they’re looking for recognition of what they’re dealing with.

The whole idea of “at least” shows a complete lack of empathy for your fellow human and basically says “Okay, so you’re suffering, but in my mind there’s still a single good to some of this, so you’re practically fine.” It invalidates the shit we go through on a daily basis, whether that be judging looks, ongoing pain, massive stigma, inner battles with mental health, struggles to self care or live independently, or any other number of things spoonies face, because they’re not going through a specific set of circumstances.

It’s an experience that really makes you feel less than human

We’ve probably already either gone through, or are going through, the grieving process of dealing with our lot, and so responses like that are not only completely demoralising, but are pretty painful to deal with, because it means you’ve either got no idea what we’re dealing with or have completely separated the human from the illness.

So, how do we fix it?

Why not go to something like “tell me what you deal with, so I can understand”? It makes us feel validated. It allows us to express our own personal experiences, which often go unheard. It means that you see us, you hear us, and you want to understand us.

Something like “I see where you’re coming from, and that must be difficult” works well too,  because you’re remembering the person behind the condition. You’re acknowledging that, even if you didn’t personally go through what they’re dealing with, you can commiserate that it’s probably a shitty experience, and the validation can be a powerful thing for someone who is used to having to defend their existence.

But you know what? Even a “wow, that sucks” can be appropriate, because this response, and the other two mentioned all take a moment to recognise that there’s an experience beyond our own happening, even if we don’t understand it. Sometimes we’re busy. Sometimes we’re dealing with our own issues. Sometimes things just seem way over our own heads, and that’s okay. Simply acknowledging the other person’s feelings is A+ awesome.

Sometimes, all people want is to simply have a moment, express a feeling and know that they’re being heard, without someone trying to take away from that moment, or make things better. Sometimes, we get so pent up in trying to pretend we’re well and okay, that we can convince the people around us (and even ourselves) that we’re holding things together, but everyone has moments and days and weeks. It’s all about understanding that, this might not be YOUR way of experiencing the world, but it is to someone, and they’re allowed to grieve and feel angry and kick and scream and rant about things in their life as much as anyone else. At the end of the day, all people really want is to be heard when they talk, so just take a moment and listen, and we’ll all be better for it.

——————————————————————————————–

I’m sure my hiatus left people with questions. I’m sure some of you missed my comics and rants. I’m certain some of you want to know what happened.

But, at least I’m back, right? (snerk)

Due to personal circumstances, I took a long hiatus from According to Abigail. There were a lot of things going on in my life that required my full attention – things to process, relationships to work on and doctors to see. I felt the whole process of blogging while attending to my own needs would have been counter-productive and so I made the tough decision to take a break from it all and focus on what needed to be done, so I could come back eventually. And now here I am 🙂

I aim to bring you the same snarky journals, terrible comics and awful advice as ever, and also to be setting realisitic goals for myself so I don’t burn out again.

As always, painfully yours,

Abigail ❤

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[Picture] Okay, which one of you…

… found my blog via this amazing search term. I don’t know if I’m more impressed that you actually searched that and got a result, or if the result was my blog. I think this means I’m doing something right, doesn’t it?

Fuck this shit

[Journal] Procrastination

Firstly, wow. I am majorly behind in my blogging. The last month and a bit whizzed by me in a bit of a blur. I worked until 2am every night up until my biggest market event and put everything on hold – social life, games, comics – then I worked over the weekend of my big event with the help form some very special people, and then I hit the drop after the event where my body reminded me exactly how hard I had been punishing it. Of course, this is the end of week 2 after the event and I’m only just getting some time to myself. The entire week after was supposed to be my “off week” and just happened to be filled with every appointment known to mankind. By the time I finally had a spare moment to jot down a blog entry or comic, my body turned around and laughed at me.

I’ve more or less spent the last two weeks dealing with the nuclear fallout of pushing myself harder than I should have had to, but without my normal 12 month runup to the event, I had to do 365 days of work in just under 2 months. I was NOT happy. To further my frustration, almost every bit of equipment I needed died in the arse. My PC? $1000 fix. It’s a long story, trust me, but I couldn’t really avoid the cost. The embroidery machine more expensive than my car? Eating projects to the point where it couldn’t be used. My body? Well, we had the food poisoning incident. Hell, even the event itself managed to try and do us over by throwing emergency storm warnings at us and flooding the stall. Once we got back, my car tried to shit out it’s own transmission, I ended up with (thankfully!) a mild case of tonsillitis because some chucklefuck decided to share a drink with the chronically sick girl without using their fucking brain, several hundred dollars in medical bills and general chaos.

The event turnover wasn’t as awesome as I had hoped, but I made some wonderful friends over the weekend, got to spend time with both my big and my little sister, the amazing gentleman that I call my (adoptive) father and that side of my family. When we got home, I crashed pretty hard and it’s been a very hard slog to get the most mundane things done. Today is a very good example of that. I’ve been telling Manthing that I’ll wash the dishes for two days now, but the thought of standing, using the bathroom and moving in general is filthy exhausting, and even if I had some kind of energy, the pain I’m presently in rules most stuff out, too. I’d be in bed rather than writing this blog if there was some hope of me actually getting to sleep.

I’ve spent the better part of the last 3 days watching this amazing guy (if you haven’t seen Vet Ranch, go do it now) and just trying to survive. On the plus side, I found the most recent comic I uploaded in a pile of papers on my desk and also noticed that According to Abigail has officially cracked the 40 comic mark. That’s pretty damned impressive if you ask me. Getting out of bed on a bad day can be hard enough, but this is actually a really cool achievement and one that I’m keen on continuing. My honest to goodness dream is that I’d LOVE to see my comics in print some day. An actual, physical book to hold.

For now, though, I’m content to keep on doing what I’ve been doing. I’ve also noticed that there’s quite a few more followers since my last blog, so here’s a hello and welcome to those of you joining us for the first time. May I say “I’m sorry” in advance for the shameless swearing, creative descriptors and general shenanigans you will find here. For my regulars that I can’t seem to shake, you all get gold stars for putting up with me this long. You guys must be suckers for punishment or something ❤

I'm pretty much exhausted at this point so I'm going to sign off. At the very least, I hope that this post lets you all know that I'm still alive and kicking and hope to bring you more comics in the coming weeks.

Keep being awesome ❤

Selective exposure and when helping isn’t really helping

This is an issue I’ve wanted to write about for a while now, but due to circumstances on my end I’ve been unable to either find the time to do it, been in no headspace to write about it or haven’t physically been capable of doing it. I’m hoping that taking the time out tonight to sit down and get this out of my head will mean my brain will stop charging through at a million miles an hour.

Over the last few weeks, I’ve been party to a handful of events that got me thinking. Some were good and some were bad, but they all ended up at the same two destinations in my head – the idea of selective exposure, and when helping isn’t really helping.

Most of the time when people see me, it’s usually within certain parameters. Somewhere between the “I’m feeling great” end of the scale and “I’m not feeling awesome” end. Anything beyond that and I usually rule out any form of social contact for a number of reasons. Have you ever tried to sit through a conversation and remain polite and chatty while someone’s trying to rip your toenail off? How about trying to have genuine interest in what someone says while you’re exhausted enough to actually fall over out of your chair? There’s only so far I can fulfill my social obligations on a day when I’m in above-average pain, my fatigue is playing up, or any other number of fuckery my body likes to pull.

What this basically means is that when YOU see me having a bad day, that may not necessarily be the same as MY bad day. That’s not to invalidate anything I’m feeling at the time, but my sliding scale for social activity stops at “Fucking ow”, but my whole scale goes all the way past that up to “Oh God Why?”

The bit that really frustrates me about this issue is that so many people seemed to assume that what I felt stopped at what they saw. Like, when they didn’t see me using the cane or with a visible limp, clearly I was in no pain at all, and when I did have the cane, I was still obviously okay because I was still up and talking.

I’ve had to explain to several people, some friends, some family and some other random people on the street that, when you see me out and about, when we come over for games or when I go out to get lunch, it’s a very controlled thing. I MUST be within point X and Y in order to function as a semi-competent human being and any deviation from that usually means I’m suck at home and in bed, in a world of pain. What you see is NOT what you get with me, but that doesn’t seem to stop some people thinking I’m leading them on or I’m some kind of liar.

That’s the problem with these invisible illnesses. They’re kind of just that. You don’t see them. You see reactions from them. You see the implications of them running amok in people’s bodies, but it’s not like we turn purple or grow horns. You basically have to take our word for it and actually believe us when we say we’re not well.

And now on to my next point. When helping isn’t really helping.

One of the things I’ve been struggling with over the last few months – longer, in fact. Just about as long as I’ve been sick, to be honest – is the idea of wanting to help. For the most part I try to be gracious about the whole thing and thank people where I can for stepping in. However, there are other times when people overstep boundaries in eagerness to help the cripple or, assist the female or even lend a hand to the friend.

First and foremost, there are two different kinds of help I want to identify, and there aren’t always defined boundaries between the two.

The first is helping because they need help. This is usually the case easiest identified by the audible “Can I have some help, please”. All sarcasm aside, it’s fairly easy to see when someone’s struggling with something and you want to step in and lend a hand. It could be a case of them needing help getting up the stairs, or opening a jar, or changing a light globe, remembering a birthday or even recalling what they walked into the kitchen for. There’s usually some kind of body language on the part of the helpee and an acknowledgement of some kind on the part of the helper.

The second kind is a little different. This involves helping because you THINK they need help. This one can be done for different reasons. Sometimes because the helper wants some kind of feeling of gratification for “doing what is right”, sometimes it’s because they think that the person they’re helping is a lot less capable than they really are and sometimes it’s genuinely out of desire to assist another human being.

Now, the problem with the second kind of help is that it’s not always called for. I had an incident with a friend the other day (which we talked through and we’re back to normal again) but it made me think about the other times where I’ve had similar situations and what all my experiences combined have taught me. People have assumed I have needed help and have gone out of their way to do this, without actually asking me if I needed the help first.

Unfortunately this division can be really hard to navigate for some people and toes end up getting stepped on.

One of the issues I find most frustrating is that we’re taught straight off the bat to assist those less able than us. In my situation I can be either more or less able in a lot of areas on any given day, so I’ve found people wanting to go out of their way to make life ‘easy’ for me without taking into account my choice on the matter, while other people that obviously require some help are left to fend for themselves. One thing that a lot of people seem to forget, though, is that (for all my cripple-ness) I’m a highly independent individual and take fierce pride in my ability to self-manage. The beautiful humour in that being that, on my bad days, I need help to dress, shower, use the bathroom, etc.

What this means, however, is that I usually don’t want help until I directly ask for it. I’m no stranger to asking for help, even if I can be a little sheepish about it at times, but when you’re stuck in body that takes a toss at a dart board to decide what you can and can’t do on any given day, you treasure those things that you can still do on your own, without help of any kind. You’re fierce about those things. You don’t want help pushed upon you because someone else thinks you need to be helped. You want to do it yourself because you’ll be damned if you can’t wash your own hair, or dress yourself today, or even go for a walk.

When someone comes along and helps you out with things they think you need help with, it crosses a line where they start robbing you of that independence. Suddenly, you’re no longer strong and capable in that area because someone else has just come along and done it for you. You’ve had the rug pulled out from underneath you and yet we’re still taught that we should say thank you because this other person only had our best in mind.

The problem is that when you live a life where independence is such a flippant and fleeting thing, rather than being preemptive help, sometimes you’re robbing that person of part of their identity. Part of who they are. That last part of the strong, capable person they were before they got sick, and that’s where things go wrong. That’s where frustrations break and feelings get hurt and it’s incredibly hard to explain a concept like this to someone who’s never known dependence on another individual. It’s hard to explain how something so well-meaning can have such a vastly opposite effect on an individual’s life. Sometimes helping really isn’t helping at all.

Far be it from me to discourage assistance when required, perhaps first ask if your person would like help with what they’re doing. If it’s not a routine you’re used to or they haven’t asked themselves, perhaps ask them if they want assistance before you jump ahead, and don’t be offended if they say no. It’s not said to reject the support you offer at all, but instead is perhaps their way of maintaining some form of normalcy over an otherwise abnormal life. Furthermore, it’s always far easier to ask first than to have a negative reaction to your good deed.

Spring is here!

It is now Spring here in Australia. What better excuse for a fresh start?

 

It’s been a while since I last updated this blog. For many reasons, it’s a very good thing. It gave me a chance to think a lot of things over without just simply venting them. It gave me a chance to work out what I’d like to do with this blog and how I’d like other people to relate to it. It also gave me more motivation to actually do something about this.

 

So, without further ado, I’d like to make this blog a bit of a light-hearted point for people with chronic illnesses to come along and have a laugh. I’d like to be able to have a weekly video blog about my life, my business and my little achievements. Things that made me smile. I’ll still be drawing those comics. Right now, I’m aiming for one a week, or one every few days. Eventually, I’d like to get back into making one a day and hopefully go about improving my art skills while I’m at it. Most importantly, I want to be able to share what it’s like to live in my life. I want to have a place to share my good days and the little bits that make me proud, but I also want a place where I can express frustration, anger or sadness over some of the trials day-to-day life brings me.

 

I want to be able to connect with the community here and the greater community across other sites, those that are in the same crap boat as I am, those that are curious as to what it’s like living with a chronic illness or those that just want to come along and follow a little bit of my life. I encourage readers to ask questions, to respond to things that resonate with them and to just share something that might make them laugh 🙂

 

So, I’ve made a deal with myself about this and I very much plan on sticking to it. Who knows where this could lead…