[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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[Journal] Hello world, this is me.

The last month has been rough. I picked up a chest infection at an event I attended 4 weeks ago thanks to some careless twat. Thought I got over it. Anibiotics the size of horse pills and the whole coughing up primordial slime shebang. I was on the end of it when I went out again, this time got a sinus bug on top, and it gave the chest infection the leg back up it needed. This time around, with the weather changes that have happened, I feel like the walking dead. I can’t remember being in a worse state this year, and it’s taken it’s toll.

Today I hit my breaking point. Today I was sick of being dishonest and constantly bullshitting everyone with how bad things have been. In a fit of god-knows-what, I made a post with a unfiltered pic of myself – straight out of bed – which I can’t share for privacy/anonymity reasons.

I feel that this may be relevant to people who are likewise suffering and need some solidarity in their fight. Today, I’m with you guys.

Today, this is Abi. This is the real Abi.

So often I am the Abi that laughs at life and herself to get her through the day. I am the woman that tells herself she is strong and genuinely tries to avoid talking about her problems so she keeps the friends she has and doesn’t become a burden. I am the Abi that will get up despite the pain and make or do something through gritted teeth just to tell myself that I’m not useless today. I am the version of me that does my best to listen to other people when they need a friend, setting my own needs aside. I am the one that downplays the effect my chronic sicknesses have on me with “I’m not the best” or “things are a bit poo” when I feel like I am dying. I am the one that goes to pains to not “look sick”, will dress up, wash my face and forego the mobility scooter and cane and wheelchair so I look like everyone else. I am the Abi that will stick it out to the eleventh hour while out of the house with friends, because I want to pretend everything is fine and just be *normal* again.

Today is a breaking point.

Today I am sick, and I have been literally my whole life. Imagine that. Think back as far as your memories go and try to imagine the pervasive feeling of pain somewhere in every single one of those precious childhood moments. Imagine them following you through to highschool and being terrified of being teased for using a cane, so you sucked it up and went without, and pushed your body further on your good days to make up for it. Imagine it as you try to find your first job, sitting like a knot in your throat, a whisper behind your ear. A dirty little secret. Because young people don’t get sick.

And just when you thought you knew the beast, it brought you to your knees. It broke you and you had nobody that understood the /scope/of agony you were dealing with, so you learned to keep quiet. First to friends. Then to family. Eventually to partners and doctors and specialists. Because young people don’t get sick. You were attention seeking. A drama queen. An attention whore. Desperate to simply find an echo of understanding in the world and the answer to the question “why?”

Why me? What did I do? Was there a reason I was chosen for this? Will I die with this pain?

IS THERE A REASON?!

But the answer is almost always silence. From family who buy your facade. From friends who don’t know how to accomodate. From partners who don’t know how to cope. From specialists who lack funding. From that little voice of self inside.

It’s always silence.

Today I am not being silent. This is me. This is that same Abi you all know. The one that laughs at fart jokes. The one that bends over backwards to help people and downplays it because she can’t handle praise. This is the Valkyrie. The gamer. The artist and lover and fighter. I am the Abi that cries in her room from uncontrolled pain. I am the Abi that is too ashamed to talk about her pain for fear of rejection. I am the Abi that has given up so many things she loves because of her health. I am the Abi that has lost friendships, lovers and opportunities because of something I can’t directly control. I am the Abi that goes to sleep with anxiety and wakes with the crushing reality of “this is what today is going to be like”. I am the Abi that has been torn up inside because I have had the very real choice of doing something I want and ending up in hospital, or staying home in my room and being safe due to the stresses going out puts on my body. I am the Abi that feels defective, lonely and useless when friends respond with “Oh, I heard you weren’t well so I figured I would leave you be” like there would be a time when I somehow was well again. And today I am not well, and I haven’t been for a very long time.

But if you’ve read this and understood just one sentence, one line, and have learned something, decided that you want to know the me without the smile, the 4am blogger, the swearing, hot mess, I might just be okay.

Today has been exhausting. Tomorrow is another day.

[Journal] Depression is like mold…

So, tonight I decided that having depression is a bit like fighting brown mold from the Pathfinder universe.

Brown mold is an interesting thing. It’s a pretty standard looking thing that you find plastered to walls and floors in dungeons, and when left alone it’s more or less harmless. However, when you encounter the brown mold, that’s where things get interesting. When it finds a source of heat (see: endothermic creatures, adventurers, pets, etc.), it feeds off that heat and draws it from any surrounding sources until they are ice cold. Anything within range of it’s draw begins to take cold damage as it eats away at the heat source magically. If you blast it with fire to try and destroy it, it simply doubles in size and continues on it’s merry existence.

Depression is an interesting thing. It’s pretty standard and most people have experienced it. You find little seeds of it stuck inside people, and when everything is going well, it’s more or less harmless. However, when you encounter depression head on because it’s been set off, that’s where things get interesting. When it finds a source of happiness (friends, family, favourite things, etc.), it feeds of that joy until it’s source has been extinguished – replaced by the same apathy and misery depression makes. People within range of someone affected by depression begin to take friendship damage as the condition causes the sufferer to push people away and find isolation, something that’s not always visible. If you drag the sufferer out into a social event or force them into ‘fun’, the depression doubles in size and leads to further feelings of isolation and sadness.

My life is undergoing some pretty big changes right now. Like. Literally life changing changes. And I’d doing my best to take it in my stride, but I’m no saint and I’ll be the first to admit that I’m actually afraid of change. I’ll run at it with a warrior’s face when I have to, but by the same token, I’m happy to just sit here and mind my own business and just do my own thing. This change has unsettled me. It’s changed the way I interact with people, it’s changed what I’ve been doing with my time and it changes how much patience I’ve had over the last few weeks -both with other people and myself.

It’s honestly starting to show. Because on one hand, I’m handling things damn well. I got through a funeral, helped with the prep, organised 50% of everything, have held things together and not slapped heads when relatives made truly horrid comments on the day, and then called my mum after to repeat them. I’m helping with the legal matters. I’m sorting the house. I’m slowly adjusting to the life changes I’m facing. I’m doing a damn fine job. On the other hand, my depression is out of hand, my anxiety is a dickweed, I feel I can count on one hand the friends that are actual friends and my body is an asshole. I feel like I’m fraying at the edges while simultaneously being the atlas of my world right now. And it’s incredibly confusing because I feel like I can’t be both of them at the same time.

I’m going to leave the blog here for tonight because I’m just too damn exhausted to analyze the situation much further. But I do plan on having at least one comic this week if everything goes to plan. Anyway, it’s almost 2am. I’ll pick up more on this another night.

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…