Spoon Dominoes

My shoes fell apart the other day, and by fall apart I mean completely fell apart, unfixable, unwearable. It’s not really surprising – I’ve been wearing them for (at a guess) 15 years now, and they’ve been threatening to fall apart for the last six months or so. Added to that, that’s pretty much the state of every shoe in my house, except for the ones I turned out to be allergic to but haven’t yet had the energy to do anything about getting rid of.

I haven’t gone shoe shopping, because it’s difficult to find shoes that are both comfortable on arthritic feet, and that I’m not allergic to, and I’ve taken on too many things at the moment, so just didn’t have the spoons to spare on anything else.

So at the weekend, after my shoes fell apart, I wore a pair that I’m mildly allergic to, and that are slightly too tight to be comfortable, to walk to work, and then to stand all day during my shift, and then to walk home again. My feet hurt all day, but my feet always hurt, so I didn’t think anything of it, until I got home and found my foot was so thoroughly covered in dried blood, I couldn’t get my sock off.

And while the wound on my foot was small, lupus makes me heal slowly, and what started out as a blister is now an ulcer. And then the immunocompromising part of my medications joined the party, and last night my toe became alarmingly hot, red and pus covered, to the point I started wondering if I would be able to balance if it got amputated.

And suddenly, what started out as a funny moment, when my shoe fell apart in my hand, had become a rather gross and painful problem. And I still haven’t bought new shoes, because now it’s too painful to walk, let alone try on footwear.

This will all be fine, I’m off to the doctor this afternoon, and I’m sure it will all be pretty simple to get under control, but it did make me think about the domino effect that often comes into play with chronic illnesses.

It’s often just slightly harder than normal to do a task, and you have slightly less energy to do it with, but the consequences of not doing it are slightly worse than they would be for a healthy person, and the consequences of those consequences are slightly more dramatic, and suddenly all those “slightlys” have built up into a much more serious problem than it ever would have been for someone able bodied.

When people think of chronic illness or disability, I think they mostly picture the big stuff – the not being able to get out of bed, or move around freely, but it’s often the everyday, little things that build up and make illness hard. The big stuff – the falls, the hospital admissions – you just go into survival mode and get through it. It’s the constant nature of the everyday difficulties that wear you down with their unrelenting nature, making everything just that tiny bit worse.

I don’t know what the solution to this is, but I do know that next time, I’ll find the goddamn spoons to buy some shoes.

Thanks for reading,

Little Miss Autoimmune

Sorry is a Sometimes Word

A few years ago, I wrote a piece about apologising in relation to my illnesses, the unintentional emotional manipulation that can accompany apologies, and why often, thanking people for their support is a much more appropriate response. In the time since then, I have gotten a lot better at saying “thank you” rather than “sorry” when someone helps me … but I still apologise a lot in other circumstances.

Recently, someone told me off for this. His reasoning – if you are apologising constantly, letting it become nothing more than a habit, then it loses authenticity. He asked what I would then do if I’d really done something wrong, and needed to give a genuine apology?

Cue moment of existential crisis as I tried to work out whether apologising to someone who’s visibly annoyed at you for apologising will make the situation better or worse and vaguely considered option three – just slowly sliding under the table while humming Tracy Chapman.

Now to be fair, I had just issued about fifteen apologies in the space of a few minutes, and once I managed to stifle my automatic need to give fifteen more for the awkwardness, I could see where he was coming from. This wasn’t a perspective I had considered before, but I’ve certainly had my share of relationships and friendships in the past where the apologies were frequent, but the changes of behaviour were notably absent, until the word “sorry” started to leave a pit in my stomach.

I am genuinely feeling guilt when I’m saying I’m sorry, and there is an authentic desire to make the other person feel better, including examining and changing my own behaviour where needed. However, I’m often apologising in situations where my guilt is unwarranted, or the perceived slight exists only in my mind.

So that leaves me with two questions:

Why am I apologising so much, and is it a problem?

At the time, the reason I gave is that I’m tending to take responsibility for things which aren’t my fault, including other people’s feelings or discomfort. Illness and disability do make a lot of people uncomfortable, and I know my tendency to start stories with things like “So this one time part of my back died for no reason… it’s okay, it grew back eventually…” do not help with this. While my twisted sense of humour, and ability to find the funny side of everything, is something I love about myself, it is also something I feel the need to apologise for when I see it make people squirm.

When I stop to consider it, I think there are also a few other contributing factors here. Of course, anxiety and depression probably play a part, particularly in the instance above as I had been going through an unusually bad mental health patch at the time, after being really well on that front since I got Bindi.

I do notice that when I’m in a good place, the apologies are noticeably reduced, or at the very least, the reasons behind them are more logical. But when I’m not sleeping and therefore slipping into a darker headspace, it can start to feel like I need to apologise for my very existence, let alone anything else. The nervous energy and overthinking aspect of anxiety doesn’t help with this either, as if you think about anything for too long you can convince yourself it’s 1) a problem and 2) your fault. There can also be an element of “duck and cover” to interacting with new people when you have PTSD (or other forms of anxiety) until you figure out whether they are safe, and you can relax with them. Even mild irritation from a stranger can feel like it could be a threat, and so appeasing the person with pre-emptive apologies becomes a part of self-preservation.

Which leads into the question of whether it’s a problem.

Sociologist, Maja Jovanovic, believes that unnecessary apologies hurt us, making us smaller and weakening what we have to say. I have started to notice there is a level of self-fulfilling prophecy to this, as rather than appeasing my guilt, apologising lots makes me feel even more like there is something wrong with me that I must apologise for. I notice my body language changing when I say “I’m sorry”, shrinking in, as if I am diminished by my mistakes, illnesses and flaws – something I whole-heartedly do not believe.

What I like to call the “Labyrinth Effect” also starts to come into play. If you treat someone or something as if they are a threat, you associate them with that fear and they ultimately become more intimidating to you. In the words of David Bowie’s Jareth:

“You have cowered before me, and I was frightening.”

Breaking the Habit

All of this has made me question the effect apologies are having on my own self-esteem, the people around me, and the way I interact with both. So, I have been trying to break my apology habit, but it has led to a strange development and the discovery of one more possible reason why I apologise so much.

I decided to start small, addressing one particular form of apologies. I made a point of not apologising if someone bumped into me, or in some other way caused a disruption, instead simply accepting their apology and moving on with my day. I figured this would be an easy one to address, as I know I’m not actually at fault in these situations; I’m just apologising because… New Zealand.

But here’s where it gets interesting.

On multiple occasions, a stranger bumped into me and, when I said nothing, they came out with comments along the lines of “Oh, that’s okay, love”. I had kept my pledge to myself not to apologise, but despite this, strangers were accepting apologies I hadn’t given and didn’t owe. And not just one or two people, this happened on multiple occasions.

Now, I don’t entirely understand what’s happening here, but my best guess is that people are seeing Bindi and my dark sunglasses, assuming I’m blind and therefore deciding the accident must be my fault, despite evidence to the contrary.

I have to admit, after the first few times this happened, I did start to wonder if I was somehow causing these accidents, and you may well be wondering why so many people bump into me. I guess the truth lies somewhere in between. If someone is looking at their phone or walking backwards away from a conversation still focused on their companion, an able-bodied person may be able to quickly dodge out of the way, but it’s trickier for me when I’m sometimes a little unsteady on my feet and have a dog (and sometimes walking stick) to negotiate. But regardless of my speed, if you’re not looking, it’s not the responsibility of anyone else on the street to get out of your way, and certainly not their fault if you crash into them. In fact, in many of these instances, I was standing completely still, to the side of the pavement out of the way, when the person walked into me.

Expectation

This did make me consider the role expectation plays in excessive apologies. In these instances, it was very clear an apology was expected from me, whether or not I genuinely owed one. But I think it extends beyond this. Not to turn this into an norms vs crips argument, but I do think there is a level of expectation that disabled and chronically ill people will behave in certain ways, one of those being apologising for the impact on able-bodied people’s desire to do things in inaccessible ways.

Asking for any kind of access assistance – even if it’s a legal right – sometimes leads you to being made to feel like an inconvenience, as if your presence is only allowed by obligation, but that really you are not wanted or welcome. Apologising can appease some of this, allowing for a more friendly and less awkward environment for all. For example, you learn very quickly that the best way to ensure your food is actually gluten free when you’re coeliac is to start your order with an apology for being annoying, and end it with a self-deprecating joke. Otherwise, you risk an eye roll, a comment about pretentious hipsters, and a guessing game as to whether your food is actually safe to eat.

Even if the words “I’m sorry” don’t cross my lips, I’ve learnt to present certain pieces of information about my health with an apology in my voice. Not because I’m really ashamed of them, but because I am consciously crossing the taboo of discussing illness, mortality and admitting to weaknesses rather than just “being positive”. To not apologise in these circumstances, usually leads to questions of whether it’s really that bad if I’m not miserable, and difficulty getting access needs acknowledged or met.

In a confusing contradiction, I find I must also apologise if I DON’T want to talk about my health, as it’s seen as entirely unreasonable to have an assistance dog, mobility aid, or other visible sign of disability in public, but not be willing to satiate the curiosity of every tom, dick and harry as to why. People often ask invasive questions and then are horribly uncomfortable with the answers, yet take no responsibility for the situation, laying all of that at my feet instead. This isn’t just a disability thing, of course. This is something many of us experience, for example, with the question “when are you going to have babies” and the answer “I can’t/don’t want to/have just recently spawned a half alien half human hybrid”. Somehow it becomes the place of the answerer to apologise for the discomfort, rather than the invasive-question-asker to acknowledge they were over-stepping.

The undercurrent of all of this seems to be that warranted or not – I feel I am expected to apologise frequently, and simultaneously to feel bad about how often I apologise.

Refuting the Expectation

But this is not to let myself off the hook. Just because the world potentially expects something from me, it doesn’t mean I have to give it. The world has a lot of expectations of what disability looks like – most of them negative – and I do not meet many of them. Continuing to apologise in this way is reinforcing the belief that it’s valid to expect apologies, and while it’s currently socially acceptable to feel discomfort around disability and illness, or irritated at having to accommodate differences, that doesn’t have to be the way it will be in the future. Not apologising may be one way to allow people to acknowledge their own discomfort, examine it and maybe even address and eradicate it.

While exploring all of this has made me realise the apology habit is going to be harder than I thought to break, it’s made me more determined to do it. Whether it’s not apologising for someone bumping into me, not taking responsibility for anyone’s discomfort with my answers to invasive health or baby questions, or simply asking for gluten free food without calling myself annoying, I strongly suspect each small step will make a difference.

Thanks for reading,

Little Miss Autoimmune