[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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Trash and Treasure

Today is a very emotionally complicated day.

In fact, this entire weekend has had it’s own lot of ups and downs.

Pro: I got to spend time with friends.

Negative: I spent the entire weekend in high levels of pain.

Pro: We played Pathfinder and it made a decent distraction.

Negative: It made me realise how much I rely on these distractions to get through daily life, and how I never play a character with my illnesses.

Pro: I made awesome food and I should be proud of it.

Negative: I missed my adoptive dad’s surprise birthday party and hated myself for it.

Pro: Did I mention we played Pathfinder?

 

I’m making a marked point to leave this post with more pro points than cons, but it’s bloody difficult. My memory is at the worst it’s ever been. I’m forgetting names, places, details and where I parked my car. It’s starting to get scary. I’m less and less mobile. I need more painkillers and begin and end every day with a steaming hot bath to ease the pain enough so I can sleep, or get a small amount of shit done. I honest to god feel like I’m starting to lose parts of my self to this illness.

On the plus side, today I was sold as chattel to a bandit camp as an entertainer. I Inara’d the shit out of it, demanded a bath, to be unshackled and put on a performance of a lifetime. I actually earned 12gp out of a bandit camp (rolled a 37 on my perform check) and hit the soft spot of a poet-gone-rogue so to speak and, with the rest of my party, we killed the Stag lord (their leader) and I single handedly shot dead seven people from a guard tower with zero detection, and the NPC was utterly smitten – and a little afraid of me – and joined our party. We formed a kingdom, and I went to bed in utter misery because I had not only a fucked up pain flare, but a massive spike of depression when I realised just how much different the life of my character was to my own.

Right now I feel seven kinds of awful. Emotionally I feel fairly crushed. I’ve hit a new physical low. Mentally I feel like I’m drying to dig through a brick wall with a dull spoon. Everything is more or less really shit. Hell, I’ve got three or four comics to upload for you all, but I can’t sum up the effort to do it. Just the overwhelming feeling of being utterly useless seems to be overshadowing everything else I do right now.

I suppose the plus side is that I’m seeing my psych tomorrow. I’ll at least be able to talk through some of this shit with her, but the shit side is that we effectively can’t really do anything about it. We tweak medications, my chemical levels flail wildly, I still have pain flares, I still forget things, I still feel like shit. I guess that’s one of the biggest reasons I decided to make this blog so, on nights like tonight when I really don’t feel like talking to anyone (not even manthing about this shit, though I know he’ll read it anyway) I can still find some way to get it all off my chest. There just seems something harmless about writing it down. Like I somehow take the sting out of the feelings when I translate it into words. I don’t know. At least this way I don’t have to look people in the eye or deal with them hovering around me and asking if I’m okay.