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

Sweat, Create, Meditate Part Two (Mindful Creativity)

The other day, I found myself describing depression as being like the noise an air conditioner makes. The sound is always there, but much of the time you can tune it out. It becomes a background fixture of the environment, that you give little or no attention to. But then there are days where the noise draws your focus – perhaps because you got less sleep, or you’re stressed – and suddenly that noise you are normally able to tune out seems a whole lot louder. It breaks into your thoughts and interrupts your concentration, but you’re still able to function, and with some time, you’ll go back to filtering the sound out again. And then there are days when it’s all your can hear. You wonder how you ever did anything other than listen to that drone. It becomes all-consuming and thinking of anything else – doing anything else – becomes impossible. The sound become your life for a while, until you’re able to get back on top of things.

I realised later that the same could be said of anxiety, chronic pain, and other physical health problems. In fact, when I’m very anxious, I do sometimes experience it as a roaring sound in my head.

In my last post, I talked about how movement has helped me in getting myself back on track after a not so great period with my health. One of the other things that has helped a lot has been making a point to spend time being mindfully creative. I’m lucky enough to have a job which is creatively based, and I am very thankful for that, but it does mean that sometimes projects slip from being an enjoyable creative practice, to a stressful, time-pressured work one. Even outside of work, many of my creative projects this year have been very goal/completion focused, such as making weighted blankets as part of my Assistance Dog NZ fundraising. This focus on the final product, rather than the creative journey, has often meant I find myself “making on auto-pilot”, which goes against the important mindful aspect.

Spending time doing creative activities purely for the fun of them – playing and experimenting with no pressure to make something useful or “good” - means that my focus is only on the process. It pulls away from that air conditioning noise, and into the present moment. I find when I am able to make time for that playful creativity, within a few minutes my breathing is slowing, my muscles relaxing, and the roaring in my head quieting. Allowing myself that time really makes a big difference in getting myself back to a good place. Traditional mindfulness has never really worked for me, despite putting in a lot of time trying over the years, but there’s something about “mindful making” that helps the process for me.

Of course, when you’re stressed, it’s difficult to find time for creativity, and thinking of projects can feel intimidating. But creativity doesn’t have to mean a huge procedure. Here are a few of the ways I found to be creative over the last couple of months. Whatever method it is you use, I can really recommend using mindful creativity as a way to manage health stuff.

Making a different meal/baking a new recipe

Sometimes something as simple as making a meal or baking can be a great way to add creativity to your life. With food allergies, I find myself making the same things over and over. Taking the time to find new recipes – even if they’re comprised of many of the same ingredients – can be an enjoyable and relaxing way to spend an evening.

Knitting groups

I went to a couple of different knitting groups over the last couple of months. Both were free, and one of them offered lessons as well. I wasn’t doing anything particularly impressive – I’ve just been making peggy squares out of the ends of balls of wool. I may stitch them into a blanket at some point, or they may just be left as is. Either way the process was calming. 

Workshops

Here in Wellington, there are often a range of different workshops you can attend. Many of them are free/koha entry. I attended a koha candle making workshop with a friend, which was a lovely way to spend an afternoon. The candles were very simple to make, but ended up looking quite impressive.

Rearranging/redecorating

If the budget is low, finding ways to be creative can be a bit harder, but sometimes just rearranging furniture, reordering books/other items on a shelf or decorating something with scrap materials can be a cost-free way to be mindful. I ended up decorating a shelf with pictures of butterflies I cut from an empty tissue box. The end effect was quite striking, even though it came from rubbish materials. Scrap booking, collage or papier-mache all make great use of free waste materials.

Paintvine/painting/colouring in

Paintvine was the most expensive of my projects over the last couple of months. This is an evening, where you complete a guided painting with a group while drinking wine. I’ve done a couple of these now, and I really enjoyed the experience. I’ve heard some cities have similar groups such as group paint by numbers, and Bob Ross evenings. I found this particularly effective, as I had to concentrate so hard on the painting, I didn't have any mental space for intrusive thoughts. Regular painting, or colouring in would also be effective for this.

Wellington Conversations/Creative Events

Not strictly a creative practice, but one of the other very helpful things I did was attend an up-cycled fashion show, from Vinnies Re Sew and attend a Wellington Conversations event on the topic of “What is beautiful here?” Both left me feeling creatively inspired and uplifted. Wellington Conversations will be continuing in the new year, and I’d really recommend heading along for a dose of community and connection if you get the chance.

Thanks for reading,

Little Miss Autoimmune

How to be happy

Every so often, I check the stats on this blog to see how people are finding it. I don’t do this with the intention of changing anything; it’s just interesting to know what people are looking for. And sometimes kind of funny, when someone has searched something like “what to do when you vacuum up a pair of stockings” and ended up on one of my posts. Sorry to whoever that was – I really doubt you found anything helpful here!

Last night, though, I found some search keywords that caught me off guard. “How to be happy with autoimmune” and “Upset over confirmation of lupus.” I don’t know if this was the same person searching, or if it was just a coincidence. Either way, I really felt for the person.

After seeing this, I wondered if they had found anything helpful on here. Most of the time, I’d consider myself to be a happy person, even with all the health problems. But I haven’t always been. Each diagnosis has hit me pretty hard, and I have suffered from periods of depression in the past.

Recently, I was asked what my advice would be for someone newly diagnosed. This probably ties in to this quite well. So, this isn’t quite a “how to be happy” guide, but this is what I want to say to people newly diagnosed and to the person who made those searches, if they happen to stop by here again.

Allow yourself time to grieve.

Every diagnosis, I’ve had a period of grief for. At the start of this year, I was very down after being diagnosed with lupus. A few months ago, I had some very tearful weeks when that diagnosis went away again. It’s normal to felt kind of crap when you’ve just found out you have a chronic illness or when you’re feeling stressed out by symptoms that don’t yet have a diagnosis. Cry if you need to. I’m rather fond of watching sad movies and books, and pretending I’m just crying for the fictional characters, but crying just for yourself is all good too. Don’t listen to anyone who tells you to stop moping, or asks you “when you’re going to get on with your life?” Like any type of grief you need to do it in your own time and in your own way.

Find support.

Whether it’s in real life, or online, getting in touch with other people with chronic illnesses was one of the best things I ever did. Ask questions, or just have a rant, with people who understand what you’re going through. If you’re not sure where to start, have a look at Super Young Arthritics of New Zealand on facebook – it’s worldwide, not just NZ and full of awesome people.

Laugh. A lot.

Funny movies, good friends, whatever it is that works for you. Do things you enjoy. If you can’t do the things you enjoy because of pain or fatigue, are there parts of the things you used to enjoy you can still do? Are there some hobbies you can still do, even if you can’t do all of them? What is it that you like about these activities? Is there something else that gives you the same feeling? Remember it’s not all or nothing. Just because you can’t do something in the way you used to do it, doesn’t necessarily mean you can’t do it all.

Enjoy the ridiculous.

I have a pretty dark sense of humour at times. I’ve always been a fan of laughing at myself, and having chronic illness does provide a lot of material. Sometimes it confuses other people, when I laugh about the fact that I got stuck on the floor, or some other ridiculous thing that’s happened. Believe me, I’m not laughing at the time. But afterwards, being able to see the funny side really helps me. I think this has also helped me, when it comes to being more open with people about what’s going on. Sometimes it’s hard to tell people about the illness stuff, because I don’t want people to think I’m complaining and I don’t want to bring them (and myself) down. At the same time, I’ve always been someone who needs to talk about things to process them. For me, talking about the funny stuff, and laughing about the ridiculous things that happen, has often worked as a good compromise.

There’s also a slightly malicious side of me, that enjoys messing with people a little. When people ask me why I walk with a crutch, sometimes I’ll tell them I got bitten by a mountain goat or some other silly story. Even if you’re not actively trying to mess with people, their reactions to stuff can be pretty funny. I’ll never forget the day I’d left my front door open, and a poor delivery person walked in on me injecting my stomach with methotrexate (I did explain I’m not a drug addict, but I’m not sure she believed me.)  

Everyone has stories about weird or funny things that have happened to them in life. My guess is, the delivery woman went home and told her friends about the strange woman she walked in on, injecting herself. Illness doesn’t have to be off limits from these crazy stories.

Tell someone how you’re feeling.

Whether it’s your doctor, or a friend or family member, if you’re feeling really down make sure someone you trust knows what you’re going through. If the first person you try telling doesn’t get it, talk to someone else. Going to a counsellor can be really helpful as well. I worked for a mental health helpline for years, and few times when I was in a bad space, I did call the very service I worked for myself. There’s absolutely no shame in asking for help or support. And if it goes from feeling down, to thoughts of hurting yourself, please seek support immediately. Things can always get better, even if it doesn't always feel like that.

Thanks for reading

Little Miss Autoimmune.

Happiness is...

So, for a while I've been posting my articles for work up here. This one doesn't have all that much to do with autoimmune disorders, but is more about depression and anxiety, but since these often go hand in hand with physical illness, I thought I'd still post it.

Recently I was having a conversation with my friend about what constitutes a hobby, and on a more abstract level – what makes us happy.

We came to the conclusion that there were many things that we enjoy, that don’t quite constitute “hobbies” but that didn’t mean they made us any less happy. For example, I really like reading children’s books, painting my nails and drawing pictures with felt pens. I think most people would think I was quite strange if I called those things hobbies, but having things like these, that I find both relaxing and enjoyable, is essential to my well being.

A few years ago, when I was really unwell, I watched the film ‘Labyrinth’ just about every day. I think most people thought I was a bit weird for doing this, but I really felt it helped my emotional recovery. For a lot of the time, I felt too sick to get out of bed but if I wanted to watch the film – which I did – I had to at least make it to the living room.

If you’ve never seen that film, or if you haven’t seen it since you were a child, I would really recommend rewatching it. In particular the last scenes.

I’m guessing most people reading this won’t know the film word for word by heart, so I’ll summarise here. Spoiler alert – if you haven’t seen the film and don’t want me to ruin the end for you STOP READING NOW :-)

In the last scenes there are some lines which as a child I completely missed the significance of. Now as an adult, I see them not only as significant in the film, but as a comment on life in general.

“You have cowered before me. I was frightening.” The dialogue then goes on to explain that Jareth, the main character is living up to her expectations – therefore, she wasn’t cowering because he was frightening: he was frightening, because she was cowering. I realised this line, “You have cowered before me. I was frightening” could easily be talking about anxiety, depression or any number of other things associated with mental illness. Often a situation does not become frightening until we have anxiety about it – not that we are anxious because of the situation. We are anxious because we are anxious in effect. Similarly, I know if I’m feeling sad I will be upset by situations that I wouldn’t normally be. Essentially, I’m sad because... I’m sad. Not because of whatever is happening.
So this is all very well, but it doesn’t change the fact that the end result is feeling anxious or sad whatever the cause.

I think one of the final lines in the film addresses this: “You have no power over me.” Sarah, the protagonist of the film, realises that even though Jareth is frightening, he is only living up to her expectations. In reality he has no power over her.

The other night, I couldn’t sleep, and since I only get two TV channels, my choice of viewing was motorsport racing, or the Grudge 3 – neither of which is quite my cup tea. So – on went Labyrinth. I could have sat there, feeling sad and lonely, unable to sleep. Instead, I chose to do something that made me happy. I still couldn’t sleep... but that had no power of me.

Thanks for reading, 

Little Miss Autoimmune