Disability Pride

It's been a while since I blogged. Life has been it's usual mess of weird, wonderful and everything in between.

I just wanted to share this video with you. It's disability pride week, and as part of that filmmaker Rajeev Mishra and I collaborated on this film of one of my spoken word pieces.

Hope you enjoy!
Little Miss Autoimmune

Six Months on with Bindi

Strangers often come up to me and ask about Bindi. I mean, how could they not when she’s so cute? Most assume I’m training her, but when they find out she’s working with me, they generally have two questions:

How long have you had her? and How have you found it?

The answers?

Six months and Life-changing.

It’s hard to put into words how much of a difference Bindi has made for me. There are the obvious things. When my blood pressure is low or my joints are really sore, it’s such a relief to have her pick things up for me, so I don’t have to struggle down to the ground or risk passing out. When my legs are unsteady, having her beside me can keep me upright as we make our slow progress home. If I do end up falling, having her lying beside me with her head on my chest is a source of comfort and makes me feel less vulnerable. Also, she’s not been trained to do this, but she has somehow learned to pick up when my blood pressure is dropping and lets me know by biting on her lead or nudging my hands. She generally notices before I do, giving me time to sit down and avoid passing out. 

Sitting next to me, being my bodyguard after I fell down.

In the last few months, I’ve developed retinal migraines. These are episodes where I get lights and colours obscuring my vision for around 15-20 minutes at a time. As you can imagine, it can be quite scary not being able to see anything, but again, Bindi’s presence has been really reassuring. With the help of Julie from Assistance Dogs New Zealand, Bindi has been learning to do some guiding, and will now locate and take me to a chair when prompted. Knowing she can do this means I’m not so worried about one of these episodes happening while I’m out. I feel like we’re a team, and whatever happens, we’ll be able to handle it.

Of course, my original reason for applying for an assistance dog was my sleep disorder. This has also massively improved. I went from being genuinely scared that I was going to break my neck in my sleep, to having weeks where I don’t have any sleep disturbances. Having a person staying with me often made my sleep disorder worse, as their emotions and frustrations played into it, but Bindi’s inherently non-judgemental nature provides reassurance and comfort. When I do go sleep-wandering, I seem to do it in a less dangerous way now, as even if I’m running away from a nightmare, I factor Bindi into it. Whereas in the past I just got up and ran, often straight into a wall, my first thought now is to get Bindi away from whatever scary thing I’m dreaming. Since she’s reluctant to get out of bed in the middle of the night, it takes a while and gives me time to wake up properly. This isn’t something we could have predicted or trained her for, but it’s had such a positive effect regardless.

Then of course there is the emotional side of it. Having a soft little friend nearby at all times is just so heart-fillingly wonderful. I have so much love for Bindi, it’s hard to express. I don’t think there has ever been a time in my life before where I have laughed every single day. There is nothing like watching her play with her toys or do roly-polies down the bank at the park when she's off-duty. She does so many funny things and is just generally so cute it makes me smile every time I look at her. If I am ever sad, just sitting on the floor with her and playing is the best thing to make us both happy.

Trying to be a lapdog and reminding me it's dinner time (while she's off-duty obviously!)

Cuddling one of her toys

Now, all of that stuff is great, but this is a situation where the whole equals more than the sum of the parts. The difference she makes to my life is just so much more than this. There really is only one way to describe it – life-changing.

One of my neighbours commented that he was amazed by the change he’s seen in me since having Bindi. He works near the park we go to several times a day, and so sees us out walking. He asked if Bindi was for my anxiety, as he said he was really impressed with the visible change in my confidence. 

The funny thing is, I wasn’t aware that I looked anxious before, nor had I noticed a change in my anxiety levels initially. It took me a while to realise what it was he was picking up on. It’s like Bindi has freed up a part of my brain. In the past, a part of me was constantly occupied with worrying about the things I mentioned above – falls, dropping things, my blood pressure, my lack of sleep. Now, I don’t have to constantly assess whether my legs are getting unsteady or if I’m at all dizzy, or wondering what horrible dream I’m going to have tonight, because I know I have a safety net if something goes wrong. 

This is a cliché, but it’s like I’m been able to let out a breath I didn’t even know I was holding. I’m able to relax in a way I’ve never had the freedom to do before, and I’m so incredibly thankful to Bindi and Assistance Dogs New Zealand for that.

If you’d like to support the incredible work Assistance Dogs New Zealand do, you can donate through my Givealittle page for ADNZ, or consider sponsoring an ADNZ puppy.

Thanks for reading,
Little Miss Autoimmune

Plastic Straws Are A Strange Hill to Die On

The other night I found myself watching a video about a bar which has started using straws made out of pasta as a biodegradable alternative to plastic straws. Now, obviously I’m a coeliac, so this isn’t something I would personally ever want, and I could see a few other flaws with the idea. But overall, I thought it was cool that the bar was thinking about the problem, and approaching it with creativity and innovation.

And then I read the comments.

Man, this has to have been one of the most bizarrely passionate comments sections I have ever read. People were mad about food wastage, people were mad that we don’t just drink straight out of the glass, people were mad at hipsters… the anger just went on and on. But the comments that surprised me were the many many able bodied and normal-eating people getting mad on behalf of coeliac and disabled people.

So, the coeliac part of this is kind of obvious. If you order a drink, you don’t expect for it to arrive with a lump of glutenous pasta in it, and in all honesty if I drank out of a straw assuming it was a normal one, and then later found out it was made of gluten, I would be pretty annoyed. But that scenario is quite unlikely. While there obviously is a noble environmental motivation behind this, the pasta straws are clearly also (at least in part) an advertising gimmick for this bar. They’re not keeping the fact that their straws are made of pasta a secret – they’re proclaiming it loudly for all to hear. It may become an issue down the track, when the novelty wears off, but any problems would be mitigated by a simple note on the menu saying that the straws contain gluten and to let staff know if you have an allergy.

The disability part of this is a bit more complicated. For some people with disabilities, differences in strength, function or movement can mean that straws are an essential part of daily living. People facing these issues may not be able drink safely or independently without them. In this case, straws usually do need to be plastic, as the size and malleability are important, and therefore metal or pasta straws aren’t always a suitable replacement. Straws are also often used in rest homes and hospitals for similar reasons, and again alternatives other than plastic probably wouldn’t be appropriate.

When I saw comments along these lines, and realised the majority of them were coming from able-bodied people, at first I felt pleasantly surprised. It was nice to see able-bodied people thinking outside of their own experience and considering what impact a simple change might have on people with disabilities. But as I read on, and the anger and vitriol in the comments rose, I started to feel a bit odd about it.

While it is nice to see able-bodied people going out of their way to advocate for people with coeliac and/or disabilities, I feel like this is kind of a weird one for people to be getting so passionate about. The gluten stuff is a potential danger, but it wouldn’t be that hard to remedy with clear labelling and a few simple kitchen protocols to avoid cross-contamination. With the disability stuff, the times I’ve eaten in a café or restaurant with someone who needed a straw to be able to drink, that straw came from the person’s bag not from the restaurant itself. This isn’t my experience, so I can’t say this for sure, but my guess would be that it’s pretty common for people who need straws to carry their own, as they couldn’t be sure of always being able to get one from a bar/restaurant. While people needing access to plastic straws is an issue, I’m just not sure bars not supplying them is as big of an issue as some were making out.

The thing that bothered me the most about this though, is I don’t often see this level of passion from able-bodied people over other disability or illness issues. There have been so many times when I or someone else has pointed out that something is not accessible, and the response has been “Oh… that’s a shame,” and a swift change of subject. Worse, online the response is often defensive, angry or filled with nasty personal attacks, instead of doing anything to try to understand or mitigate the problem.

Where is the passion and support for those things, which (in my opinion) cause a much bigger barrier to disabled people participating in life? I know, we all have our own lives, our own causes and we simply can’t get involved in fighting for everything. But I do have to ask myself why, when people are finally getting passionately involved, is it over plastic straws?

Now I don’t want the take away from this to be “stop caring about plastic straws.” This is a real issue – both from an environmental perspective, and from the point of view of making sure people who need straw still have access to them. But if you care about plastic straws for people with disabilities, maybe just try to use some of that passion towards other disabilities issues too.

Thanks for reading,

Little Miss Autoimmune

Disability and Ableism

I don’t like conflict. I mean I really don’t like conflict. In the last few years I’ve developed a fun symptom where if I get really angry or upset, my blood pressure drops and I run the risk of passing out. As a result, I’m now a pretty calm person and I avoid potentially emotionally-laden conversations, especially online.

But there have been certain discussions lately that have been harder to ignore. The film Me Before You has prompted a lot of people to make comments about how they would kill themselves if they were to become disabled, in arguments defending the film.

I find it baffling that any reasonable, modern person would consider this an okay thing to say. My initial instinct was to avoid dealing with this, but when a comment of this nature was made on my facebook, I saw just how widespread and accepted these ideas are, and realised that most people don’t even understand that what they are saying is harmful. As difficult as it is for me to talk about this stuff, I can’t expect the world’s perception of disability to change if I am not willing challenge to it.

Saying that you would kill yourself if you became disabled, is not any different to saying you would kill yourself if you were gay. I understand that this may be confronting to hear, but that doesn’t make it any less true. The only difference is that one of these statements is considered socially acceptable to say, despite the hurt it causes, and one of them is rightfully condemned because of its harmful nature.

To be really clear, I am not against the idea of euthanasia (I am not necessarily for it either, but this is not what this post is about.) If you say you would kill yourself if you were to become disabled, you are not talking about euthanasia, or even talking about your own life, but instead about your perception of what a disabled life is. Whether this is your intention or not, you are effectively saying that you do not believe disabled people’s lives are worth living. Effectively saying my life is not worth living, that killing myself would be a reasonable decision.

Online, posts are read by able-bodied and disabled people alike, and in all likelihood at least one of those people is struggling to find reasons to stay alive right now. A major life change, like a new disability, will often involve a process of grief, and suicidal thoughts may be a part of that. That stage of adjustment and grief is not what life with disability is going to be like forever, but it’s hard to know that when you’re in middle of it. If someone was suicidal because of depression, personal crisis or any other reason people would give them support and list reasons to live. However somehow it’s seen as okay for people to publicly state that they would kill themselves if in that position, when it comes to disability. Depression can be feel just as debilitating as a physical disability, yet it would not be okay to say “I would just kill myself I were depressed like you”. If these types of comments were made about any other issue, they would be labelled as bullying, and removed from forums.

To come back to my earlier point, there is absolutely nothing, NOTHING, wrong with being gay. There is, however, something difficult about being gay in a world that contains homophobia.

There is also nothing inherently bad about being disabled. But there is something very difficult about being disabled in a world that is set up for, and rotates around, able-bodied people.

I’m going to say that again, because I get that for some people this will be a perspective shift that is difficult to make. There is nothing bad about being disabled, it is the world which we all create and contribute to which makes it feel that way.

There will be no choice over whether or not you become disabled in your lifetime. Illness or injury may strike, and the results of that are out of your control. It is within your control, however, to influence what type of world you would end up disabled in. People feel like they would kill themselves if they were disabled, because they live in a world where that is an okay thing to say. Where accessibility is an afterthought, where disabled people are seen as un-dateable and un-hireable. Where getting even the most basic of needs met requires fighting red tape in underfunded and broken health, welfare, and social service systems. Where, as a disabled person, the only representation you see of yourself in film is where the characters kill themselves because they don’t feel a life like yours is worth living, and where able-bodied people walk out of the cinema loudly proclaiming how lucky and grateful they are not to be like you.  

This does all add up to feeling like the world supports your right to die, more than they are willing to support your right to live.

This week 19 disabled people lost their lives, and 25 more were injured, at the hands of someone who is reported to have said he was trying to rid the world of handicapped people. I’m sure many people would like to dismiss this as the actions of someone deranged, but I’m not sure I can do that so easily. I can’t help but draw mental comparisons to the climate of ableism we live in, and the violence that stems from the climates of racism and homophobia.

Instead of saying that you would kill yourself if you became disabled, how about doing something that would make the world more liveable for disabled people? How about changing things, so that suicide doesn’t feel like the only option.

I know, it seems like an unreasonable ask. You are just one person, and you can’t possibly change things when the entire world is set up for able-bodied people. But every little change can make a difference. Even if it’s just to one person.

•    If you are setting up an event, is it possible to use an accessible venue? I often hear “but will disabled people even want to come to this?” – if you want to go to it, it’s likely someone with a disability will want to as well. If you can’t find a suitable accessible venue, ask the venue you do use what provisions can be made for people with disabilities attending. This doesn’t need to be an argument, sometimes all it takes is someone asking the question to draw attention to the issue. If you decide not to use a venue because it’s not disability-friendly, tell them that’s the reason – bringing it to their awareness gives the owners the opportunity to do something about it.

•    If you are an architect, game developer, business owner, webmaster, theatre creator – anything where you are creating something – are there ways to make your creation more accessible? If you’re not sure, is consultation with people with disabilities possible? For example, is there really any reason to make the main entrance stairs instead of a ramp, or is that just what you’re used to? If you are not in charge of making these decisions, can you challenge the person who is to think about these things? Lack of accessibility is often an oversight, rather than an intentional snub, and bringing it to the front of people’s minds can make a huge difference. I know I could probably do better on making the websites I run more accessible – this is a small thing, but it’s a change I can make.

•    Try not to get angry or defensive if someone points out that something is not accessible. I was shocked at how nasty people became when it was pointed out that Pokemon Go is not accessible. I know you all love catching Pokemon, and there are some great things about the active nature of the game, but that doesn’t change the fact that it isn’t accessible for everyone. It’s okay to enjoy things that aren’t disability-friendly. It’s not okay, however, to get defensive, chuck a tanty and spew horrifying abuse when the lack of accessibility is pointed out to you. Disabled people do not need to “just go off and die” because you think it might interfere with your fun. Accept it, help look for workarounds if you can, and keep accessibility in mind the next time you are creating something.

•    Challenge people if you hear them say derogatory things about disability. If you wouldn’t put up with racism, sexism or homophobia, don’t put up with this either.

This has been a hard post to write, and I accept that not everyone will agree with what I’m saying. Other people will have different perspectives on these issues, and that’s okay. Again, I am not making judgements about euthanasia itself here. That is a completely different issue. My hope is just that one day, disability won’t be that big of an issue, because the world will have figured out how to make it work. I know that the things I’ve suggested here won’t change the world, but they are a start.

Thanks for reading,
Little Miss Autoimmune

Dear Polly, thanks, but my life isn’t shitty

People have a lot of misconceptions about disabilities, and I understand why – the word spans a huge spectrum of life experiences. But one of the biggest misconceptions, which I can’t really get past, is the idea that our lives are automatically bad or pitiable.

When you find out that someone has a disability, all you know is that some part of them does not work in the same way it does in able-bodied people. You would probably be right in assuming that some aspects of their life are harder than they are for other people, but beyond that you can’t know anything about their intelligence, happiness, or level of achievement. There are probably disabled people out there who are happier than you. There are probably disabled people out there who have achieved more than you. There are probably disabled people out there who are kinder, meaner, prettier, uglier or better dancers than you, because all a disability tells you is that one part of them doesn’t work in the average way.

But this isn’t the message we get from the world.

Recently I read this article from Polly Gillespie, and it frustrates me immensely. I can see why she was angry at the man in the wheelchair, and I do think he was behaving badly. I don’t think she was doing anything wrong by using the disabled toilet, but I feel her description of disabled people as “you poor infirm, elderly, arthritic, mumps-bearing person” buying incontinence pads is childish and uncalled for, as is calling someone in a wheelchair “shorty”. The part that really bothered me though was the assumption that a disabled person’s life is “shitty” or that it is necessary to feel sorry for them. To be fair, we have all said stupid things in the heat of an argument, but I find it concerning that once she had a clear head, she and (presumably) at least one editor didn’t see a problem with putting this out there in the world.
 
My intention in writing this is not to have a go at Polly, as this does not stem from a problem within her, but from the way disabilities are viewed in general. I use this as an example, but this attitude is everywhere, and often the people making these kinds of statements do them with good intentions. People may believe that they are being compassionate or offering a kindness in feeling sorry for someone, but there is a huge difference between compassion and pity. If you’re confused about what that difference is, Brené Brown’s beautiful short film about the difference between empathy and sympathy might be a good place to start.

I really appreciate it when people show consideration and compassion towards the fact that some parts of my life are hard.

I hate it when people assume my life is shitty because of these things.

It makes me feel ashamed and embarrassed and question my own worth. It makes me feel as if my life is seen as something broken – that I will only be seen as worthy or whole if I get better or am fixed.

I can’t count how many times strangers have offered to pray for me to be healed, given me unsolicited (and almost always inaccurate) “medical” advice, or spouted diatribes about how a positive attitude will be my saviour. Years ago, I wrote about how a stranger had lectured me about how I shouldn’t accept walking with a stick, because I should be striving for something “better”. In that case, I asked him why he was so sure a life walking without a stick was better than walking with one, and he found he didn’t have an answer for that. In these cases every one of those people was coming from a well-meaning place of good intentions, so sure that their advice would make me “better”, but none of them took the time to find out what my life is like now.

Disabled people are not broken. We don’t need to be “fixed”. This might seem like a contradiction when we are often looking for medications, treatments or cures, but these are about making the hard parts of our lives easier or less painful, not about assuming a life without disability is automatically better.

Recently someone asked me why I was walking with a stick, and when I explained, he said “well I suppose a lot of people feel sorry for you.” I think I surprised even myself when the words “But I don’t need anyone to pity me, my life is awesome” came out of my mouth.

My life is awesome. It will be awesome if my disability goes away. It will be awesome if it stays. Yes, it is incredibly hard and painful sometimes, and compassion or help for that hard stuff would be welcome. But pity does not help either of us, so let’s leave that at the door thanks.


Thanks for reading
Little Miss Autoimmune

"Short" is not a Deficiency

A few weeks back, someone told me off for calling myself short. She said I should never say that, because it implies a deficiency. I was quite taken aback by this - one because it’s really awkward to be told off by a complete stranger and two, because I didn’t even kind of agree with what she was saying. To my mind, the only way calling yourself short can imply a deficiency is if you actually believe being short is a deficiency, and… well… honestly? If you think that, it is entirely your issue not mine. To give you some context to this situation, I’d called myself short while accepting an award (because I couldn’t reach the microphone) so I really had no reason to be feeling deficient in that moment. I’ve never seen my height as a negative, and I think trying to avoid using the word “short” would make me start to have issues about this, rather than resolve any imaginary ones she felt I must have.

This conversation did make me think about some of the other language things that come up. Sometimes people will try to tell me not to say I have a disability, and give some waffly explanation about how we’re all unique and that it doesn’t make a difference. After the “short” conversation, I had a bit of a light bulb moment as to why these kinds of pronouncements leave me feeling worse about myself, not better as I’m sure the person making them intends. Firstly, this is actually incredibility patronising. Having a disability makes quite a bit of difference to your life - it changes the way you do... pretty much everything - but not necessarily all in a negative way. While I do have some self-esteem issues about my health problems (which I'm working on!) I’m not putting myself down when I say I have a disability; it’s just a description of the situation. Secondly, people telling me not to say this implies that they do believe that “disability” is the equivalent of “deficient” and something that should skirted around or kept hidden. The message I come away with in this situation is “Disability does make you deficient, but let’s not talk about it because I, the benevolent able-bodied person, am kind enough to treat you as an equal anyway”. That's probably not what's intended, but it's how it feels.  

Not using the word “disability” doesn’t make the disability go away. I should be able to acknowledge that this is a part of my life without the incorrect assumption that this is a derogatory thing to say about myself. I admit, some of the language I use towards myself probably does seem harsh. I’ll say things like “I’m a bit bung” and I have been known to describe myself as an “evolutionary f**K up” when the question of how many diseases I have comes up. After I posted about the problems I run into sometimes with talking to “healthy” people, a few of my friends told me that me saying “I should have been weeded out by evolution by now” made them uncomfortable. I kind of get where people are coming from with these ones, but again, I’m not actually saying these things to put myself down. I’m saying them because… well they’re funny, they’re true, and acknowledging that generally makes me feel less deficient, not more.

I guess a lot of this stuff comes down to personal experiences and preferences, and perhaps the relationships between people in these situations makes a difference too. I do appreciate it when friends call me on it if they think I’m putting myself down, especially as I do that a lot when I’m in a bad space and it ultimately feeds into negative feelings about myself. The key thing here though is that they are my friends, and know me well enough to be able to make that call. Deciding that you know what’s best for a complete stranger, especially when it comes to neutral terms like “short” and “disability” (which are only negative if you chose to view them that way) is interfering at best, and straight out offensive at worst. You can think these things if you like, you can even say them if really you want to, but perhaps turn them into discussions not lectures. After all, the person you’re talking to is the expert on what it’s like to live their life. Not you.

Thanks for reading,
Little Miss Autoimmune

One Hundred and One Small Problems

“How do you do up your bra when your joints are swollen?”

After I got over the shock of being asked this question out of the blue the other day (and stopped laughing) I admitted I don’t. When my elbow/hand/shoulder joints are too stiff or sore to reach behind my back, I skip the bra and just opt for clothing that makes that fact less obvious. This is just one of the many small problems I face living with autoimmune arthritis.

Often people focus on the big issues with autoimmune diseases – permanent disability, mortality rates, infertility, risk of infection. And don’t get me wrong, these are BIG problems, but there are hundreds of other small problems that I, and others like me, face every day. Most of them seem insignificant in comparison to the big stuff. Some of these problems are even kind of funny, and make good anecdotes if told right.

I once went to a dinner party, and had to keep my coat on until a good friend arrived because I hadn’t been able to do up the zip in the back of my dress.

I once had to get the sales assistant to take the tag out of a top I was trying on while I was still wearing it - not because I was so desperate to wear it home - but because once I’d put it on, my shoulder froze and I couldn’t get it off again.

And a couple of non-clothing related ones: 

I once splashed a whole cup of water into my own face in front of a group of people, because my arm and neck spasmed at just the wrong moment. No-one saw the spasm. Nervous laughter ensued.

My leg once gave out while I was standing on the bus, and I collapsed into the lap of a complete stranger. Fortunately he thought it was funny too.

But most of the daily problems are not so funny. 

Tonight I took ten minutes to break the seal on a jar of pasta sauce. When I finally got it open, the jolt hurt my wrist so badly I literally screamed from the sudden pain and started crying.

Yeah, not such a great anecdote. So now I’m sitting here with my wrist in a splint and typing this one handed, while I recover enough to use the pasta sauce to make my dinners for the rest of the week. These kinds of problems make even the simplest tasks a lot harder, and often problems involve asking myself a lot of questions before I do anything:

·         Can I carry this without dropping or breaking it? If I carry it for too long will my hand “lock” around it, so I can’t let go? Will my handbag be too heavy if I add tissues/water bottle/medication/eye drops etc. etc. etc.? If I don’t bring them and end up needing them, will I be able to manage, or will I have to come home early? 
·         Can I go to ---insert place name--- since my symptoms mean I can’t drive? If I go by bus, will I be able to get on and off again safely? When so-and-so says it’s within walking distance of the bus stop, is that my walking distance or a healthy person’s walking distance? If I walk/bus will that use up all my spoons, before I even get there?
·         Will I be able to dress myself without assistance if I buy this piece of clothing? Will people notice that I haven’t been able to wash/brush my hair today? Can I open my jaw enough to brush my teeth today? Can I brush my teeth anyway, since my mouth is filled with ulcers? If I don’t brush my teeth, is that tempting fate for infections? Should I just stay home?

Still not as significant as the big stuff, right? Well, if there were just a few of these problems, it wouldn’t be that big of a deal. But when there are hundreds of them every single day, it’s easy to grow weary of them. Even the funny problems, aren’t so funny when in the back of your mind there’s one more looming question:

Why can’t anything ever be simple?

Thanks for Reading,
Little Miss Autoimmune

I wrote this post as part of the lead up to the 2014 World Autoimmune Arthritis Day online conference (6am ET/USA May 19^th- 5am ET/USA May 21^st) the theme of which is “A Day in The Life of An Autoimmune Arthritis Patient.” You can learn more about WAAD14 or register at http://www.worldautoimmunearthritisday.org/! REGISTRATION IS REQUIRED for the online virtual conference.

Disability Chic

After living on my own for a year and half, and periodically have to call my dad to come rescue me after I fall down, I’ve finally bit the bullet and got a medical alarm installed. I’ve delayed up until now, because there was still a part of me that wasn’t ready to admit I needed one. Even so I was totally confused when both my doctor and the lady who came around to install it, told me very firmly “But you must actually wear it!” Why would I go to the trouble of getting one, if I wasn’t going to wear it? And then I realised what they meant. All the time, not just at home when I’m alone. All the time, out in public.

Wasn’t it bad enough that I’d swapped pretty bracelets for a medic-alert; high heels for crocs; and already had a number of “disability accessories” like Molly Stick and wrist splints? Now I had to add a giant hunk of plastic hanging around my neck as well?

I get why it’s necessary to wear it all the time, and after a moment of feeling sorry for myself I put away my vanity and got over it. I even started coming up with jokes about it, for if anyone asked what it was. But then I wondered if that was the right response.

A few weeks ago, I found myself crying over some posts about crocs made on a public page. I was really annoyed at myself, partly because it was such a shallow thing for me to get upset about, but also because I’m usually pretty good at ignoring silly comments on the internet. I’ve posted before about my reactions to the irrational amount of rage and nastiness directed towards crocs, but this time it was a bit different. The gist of the posts this time: No one will ever find you attractive if you wear crocs; you must have given up on ever having sex; you make other people feel nauseous. It was honestly like having someone take the worst things I’ve ever felt about myself, in my darkest moments, and post them on facebook for me to read.

I didn’t respond to any of the comments on the page, one because people on the internet are crazy, and two because I knew exactly what the response would be. “Geez, it was just a joke!” or “Have a sense of humour.” And if I explained that actually sometimes there are people in my situation, who are allergic to the glue used in shoe production, and/or live with chronic pain and disability, I would get irritated responses that “that’s not what this post is about” and “God, some people have to get offended by everything”.

The thing is, I do have a sense of humour. You have to if you’re in my situation, but I feel like these comments crossed over the line from good-natured teasing to self-esteem destroying. Even when comments don’t cross that line, sometimes I don’t want to have to have sense of humour about how I look. Sometimes I just want to feel like I look “okay” or "nice" even, not “okay, despite...”

When I posted about crocs before, I heard from several women living with chronic pain that they had also been brought to tears by nasty comments made in person about their footwear, or felt shunned by other women in places such as school pick ups because of it. I had a job interview recently and found myself seriously considering which of wearing crocs, or wearing shoes that would make me hobble and want to scratch the entire time, would make a worse first-impression. These comments might be “just a joke” but they have a knock on effect, to people’s self-esteem and to what other people think are appropriate comments and behaviour in real life, not just on the internet.

The day after all this, a complete stranger came up to me and told me she liked my shoes, and I almost dismissed the compliment because I was sure it must be a joke. Then I realised that I have actually had a number of genuine compliments about my shoes in the past. I’ve had people who really dislike crocs comment that bright purple shoes with black tights do look cute, and there were a number of people who said that they wished their feet were small enough for the pink butterfly ones.

The other day, one of my friends commented that she liked my necklace, without knowing it was a medical alarm. So I’m not going to feel bad about having to wear it, and I’m not going to make jokes about it either, because ultimately it feeds into that feeling of having to laugh off: “I would look okay, if it wasn’t for...” The lady who installed the alarm for me told me to make it trendy, and that’s what I’m going to do. If that makes you think no one will ever find me attractive, then for god’s sake keep that to yourself, because that is your issue. Not mine.

Thanks for reading,

Little Miss Autoimmune