It has been a while since I’ve visited this little corner of you, but I think it’s about time I made a brief appearance to clear a few things up.
Who am I kidding, this is me. It probably won’t be that brief.
This week, I had the pleasure of contributing a short piece to an article for BBC News called Hidden Disabilities: Pain Beneath The Surface. This was originally part of a larger piece that I wrote about accessibility and travel when invisibly disabled, and was edited down and de-sassed a fair amount to be used as part of a more general article about invisible disabilities.
Cos I’m pretty damn sassy.
I’m always so glad to be able to contribute some of my experiences to help raise awareness of some of the struggles I face on a day-to-day basis, and I’m really happy about the response it has had so far.
I love getting emails from people who’ve read things that I write and have found it helpful, and whenever I write on a huge platform like the BBC, I always get a huge influx of messages. I always try to respond where I can, especially to people who are asking for some advice, but it’s sometimes difficult when I’m having a flare-up or am busy (so sorry if I’ve accidentally missed yours!)
Over the years, I’ve also received innumerable messages (but they’re only innumerable because half of them have been blocked, deleted, and scrubbed from my memory as much as possible) from people who believe they can cure me.
These people generally fall into three camps: religious people, pseudo-scientific woo-woo people (I need a better name for this!), and people who have “cured themselves” and believe what works for one can work for all (I’m not going to get into the whole misunderstanding illness thing today).
It’s not that I can’t deal with criticism (although, I’m sure my mother will disagree – that’s not the point here – shut up!) The point is, I really don’t understand what drives people to have such a skewed view of the world and their own bloody importance that they would contact a total stranger claiming that they can help to cure them.
Want a political debate? Fine. I mean, I can’t be arsed for one, this isn’t an invitation, but a political debate is different. My body and how I live my life is not up for discussion with internet randos.
It’s invasive, it’s upsetting, and above everything else, it’s pissing me the fuck off right now. It has got to the point where I just don’t want to see this nonsense anymore, and it makes me consider turning everything to private and just stopping.
But don’t worry, you won’t get rid of me that easily.
You may make the argument that I choose to share aspects of my life online, so I should just have to put up with unsolicited opinions from random strangers on how I choose to live it (oh, and creepy messages from men – that’s been fun – thank you).
I disagree. I write about my experiences so that others who are going through similar things can feel less alone, and also to raise awareness of the realities of living with invisible illness in your twenties.
I’ve never understood this whole ‘comment’ culture…and to be honest, it’s the same with anywhere you can comment online.
Of course, I’m human, I have (a lot) of opinions on (a lot) of things, but I just don’t get what drives people to believe that what they think about total strangers is so important that they have to tell them. I was writing a bit about this on Instagram yesterday, and a couple of people (men) literally messaged me to mansplain how I should be feeling.
It’s like the Vegans who get offended when I write about Veganism not curing me and that I’m now eating burgers, and feel like they need to message me their disappointment. Don’t like what I talk about or post? Don’t follow me. Simple. If you’re a Vegan, whatever, I don’t care. You eat what you want. I’ll eat what I want and makes me feel best. No harm no foul (hehe, get it?)
Social media platforms like Twitter and Instagram give people an inflated view of their own self-importance. It has never been easier to get in direct contact with pretty much anyone you want, and you can see this in the awful and bizarre way many people tweet opinions, hate, abuse, and even rape threats at celebrities or journalists.
Getting into wellness was probably the closest I ever got to this, and so on one level I can understand a smidgin of the culture. I wanted to shout from the rooftops about how I was trying to ‘cure’ myself with diet when I thought I’d found something that worked, but as far as I can recall this was mainly limited to the content I was publishing on my own platforms. I may have (and if I did, I sincerely apologise – it was a weird time) shared what I was doing any why in comments on other accounts, but I seriously doubt or recall sending any messages to people being like “Oh hey, I’m doing this to cure my chronic illnesses and it’s working (aww the ignorance of youth) and you can do it too!” I’m not including in here interviews I gave or articles written about me at the time.
I’ve written a lot about this experience, and you can check out this post to understand more about what I’m blabbering on about.
Of course we all have opinions on other people and how they live their lives, but unless they’re our close friends or family (and of course, how we talk to different people all depends on the relationship), why would you go to someone and tell them that? A stranger, no less?
It just doesn’t make any sense to me. Would you go up to a random person on the street and start sharing your thoughts on them?
Oh wait, I have had people come up to me when on crutches, clutching Jesus leaflets saying they can cure me…never mind.
The thing is, this isn’t just about me receiving messages that I don’t like. It goes much deeper than that. It’s insensitive, it’s offensive, it’s absurd, it can be erousgerous, and it speaks to wider issues we have in our society that piss me off no end.
And because this is my little corner of the internet where I can say what I like, and if you disagree with me, you’re welcome to not read, get strapped in because I’m about to have a little rant.
As always, I can only speak from my personal experiences and how I feel about these issues. Other people with disabilities may feel differently (obviously, because y’know, we’re not a homogenous group), and I’m obviously not speaking for anyone other than myself. And here’s the thing: I’d love to hear from you in the comments below about your experiences and thoughts on this. I have no problem with comments that disagree with me and have different experiences…it’s a totally different thing from what I’m talking about!
I also want to put out as a disclaimer, that I have no problem at all with people who “believe” whatever they believe in. I understand that for a lot of people (and even those with disability), faith of any kind can be incredibly comforting. I also understand that a lot of people with faith do genuinely reach out because they feel like they’re helping, but I don’t think that negates the fact that what they’re doing is wrong. There’s a form of selfishness in only seeing your perspective in situations like this, so while I’ll accept that for many it can come from a good place, it’s ultimately problematic, and these people need to become more educated and tolerant of the impact their words are having on other people. Oh, and recognise that their desire (or religious/spiritual imperative) to ‘do something to fix someone else’ is not more important than the person they’re trying to “fix”!
Personally, faith isn’t something I can connect with, and that also needs to be respected. I strongly believe (there we go, a belief!) that anyone should be allowed to believe what they want, just so long as it’s not hurting anyone, and they don’t push it on other people. Believe in God? You do you. Just don’t tell me I should do the same.
This isn’t intend to bash people of faith or people who are genuinely trying to help. I’m just trying to raise awareness from the other side, and to give a perspective that I’m assuming a lot of people are ignoring when they reach out in this way.
So, that’s a thousand or so word intro. I’m clearly frustrated…or I’m just taking a page out of the Angry Chef guide to blogging…! But yeah, here are some of the reasons I believe that telling me you can cure me (in whatever way) is wrong.
Don’t feel sorry for me, help me
I don’t mean help me in a charitable way, and I most certainly don’t mean feel sorry for me.
The thread that seems to run through the people that message me is often really strong belief, either in religion, pseudoscience, or “it worked for me so it can for you, too!” which in many ways, makes any message they send somewhat about them.
I mean, think about it. On reading about my experiences, the first thing that pops into their head is that they’re the one who knows the secret to fixing me, be that religion or The Secret, that no one else seems to have thought of.
In reality, these people know nothing about me. Yes, I share a lot about my health, but I don’t share everything that’s going on in my life, because y’know. It’s my life.
You can’t get an accurate representation of everything about a person, and even though I share my medical stuff here, this isn’t a full-deep dive into my records. It’s only a glimpse. How can you have such a strong belief in your ability to do anything based on that?
Maybe before you start composing an email or seeking me out across social media, educate yourself about the realities of invisible disability and disability more generally.
As I’ve written about many times, and y’know, you can learn by doing some very simple internet research and using a little bit of common fucking sense, I can’t be cured.
Yes, my physical experiences are difficult, but the thing that’s more disabling than anything else is a society that tells me that I’m not deserving of assistance, and where there’s very little in place to help me manage my conditions or live my life on a level playing field as everyone else.
Because, in reality, ‘ability’ shouldn’t be a factor. But it really is. When it comes to working, education, travelling, housing, healthcare and much more.
If you really want to help someone in my situation, before wading into my life, think about what you can do to be more understanding and aware of the way you treat other people, and how you can make the world you can influence a little more accessible, both physically and atmospherically (….that’s a thing…promise).
Want to make a difference? Donate to a charity. Consider learning how to become disability inclusive at work, don’t take up priority space on the tube, and fold your buggy so wheelchairs can access the space.
Not everyone wants to be cured
Why do you think that everyone can/needs to be cured? If you look at quackery around Autism as an example (where parents, horrifically, are essentially ‘treating’ their kids with bleach) you’ll see that in many circles (woo and religious alike) there’s a belief that everything that doesn’t fit into the ‘healthy norm’ needs to be cured.
A big part of the reason why? Many of these people believe that if someone is disabled, ill, or poor, it’s often their own fault – a moral or spiritual failing, if you will.
That’s why I’ve always called nutribollocks ‘pseudo-religious’ – it’s the belief that because I’m not following a certain set of rules, I’m responsible for my illnesses. More on that below. Spoiler alert: fuck off.
Wow, I am feeling sweary this morning!
I’ll admit, I hate my chronic illnesses. Yes, they’ve taken me down a path that I never would have followed if I were healthy, and they’ve probably made me a kinder, more empathetic person (which is saying something, because I’m still not the most patient!) but they cause so much pain on a day-to-day basis that I would do anything to just have my health back.
I say back…I was 9…erm…I’d do anything to not feel this way everyday.
I’m not one of those people who can write a post about why I’m grateful for my chronic illness. That being said, they are part of me, who I am, and what I do, so it’s a weird kinda balance.
Putting me aside for a moment, it’s super important to recognise that not everyone wants to be “cured”. For many people, their disabilities aren’t something that is seen as the negative it is to the outside world, and they’ve never known their life any other way.
Just as you have things that are unique about you, someone’s blindness or Asperger’s is a unique part of what makes them them. Why should they feel like they need to change it?
I’m not going to get into the whole politics of this here. For two reasons: 1) it’s early in the morning and I haven’t slept for two days, and 2) because there are other people who can speak on this much more eloquently than I can. Check out this piece from Disability in Kidlit for a deeper perspective on this issue as a good starting point.
It’s Upsetting & Offensive
Aside from not recognising that not everyone wants to be cured, actively seeking out sick and disabled people to tell them that they’re needlessly suffering can be both offensive and traumatic.
I’ve really struggled to accept my health conditions over the years, but I’m finally starting to be in a place where I can stop fighting my body, and start learning to live with what I’ve got. After all, accepting and ‘giving in’ are two entirely different things, and accepting the fact that this is my body doesn’t make me weak or wrong.
Look at conversations happening on chronic illness Twitter or Instagram, and one of the most common things you’ll read is that most us have have probably already tried anything that you’ll come to us with to help cure us (because it cured your aunt’s yoga instructors dog or whatever). Or y’know, those things are just wrong. Or dangerous for our bodies.
Fun fact: Yoga is dangerous for me and juicing didn’t cure me. WHAAAA?!
Even if I hadn’t tried a million and one different things (and spent way too much money in the process), it wouldn’t change the fact that my conditions aren’t ones that can be cured.
Important note alert: people shouldn’t have to actively be fighting their conditions or trying to cure themselves (and failed) for you to accept that they’re genuinely unwell.
My conditions can be managed (up to a certain extent), but that requires a huge amount of adjustment and sacrifice from how I imagined my life would turn out. These adjustments don’t take anything away, not even the pain or fatigue, but they enable me to try and do more with them.
So when people are telling me that I’m not doing everything I can to “fix” myself, I find it incredibly upsetting. Even now, I sometimes end up blaming myself for a flare-up, even though I know it’s probably just the weather, my hormones, or y’know, a Friday.
It has been such a hard, traumatic process to get to the point that I’m at now. It’s hard to accept that you’ll be in pain for the rest of your life. It’s hard to accept the barriers that I’m constantly running into headfirst. It’s made so much harder by people approaching me to tell me that accepting it is wrong and that a cure is around the corner if I just believe.
And hey, maybe science will develop over the course of my lifetime, in which case, we can talk. But maybe check your inflated sense of self-importance? If the medical experts in my conditions have very little research or evidence that can help me right now, why do you think you know more than them?
You don’t. Walk on.
I do not believe in God, and I do not believe in the power of prayer, Kale, faith, Jesus, Homeopathy, Moses, Xenu, Unicorns or whoever else to “heal” me. And no, that’s not the reason that I’m sick
Over the years, I’ve had so many messages, phone calls, and emails explaining in minute detail the reasons why I’m *still* unwell. It’s usually because I’m thinking the wrong way, don’t believe in the right thing, am not eating enough ‘superfoods’, or because I’m eating too much meat. Oh, and obviously, not doing enough yoga. Duh.
I once went into a church (that was pretty much a weird mega church cult thing) with a friend because I was convinced it was a cult and I needed to see it with my own eyes, and I remember nearly walking out. I was furious. The guy speaking started talking about how people who are sick and suffer from pain just have to believe in Jesus and they’ll be cured. It’s the same type of language as ‘the universe has your back’.
The reason that i’m sick isn’t because I don’t believe in what you believe in or because I haven’t ‘tried hard enough’ to be better. This is just my body. It’s how I was born. It’s the way I’m made. My disabilities are caused by defective collagen. That is structural in my body. And even if that weren’t the case…
IT’S NOT YOUR PLACE TO TELL ANYONE THAT THEIR DISABILITY IS THEIR OWN FAULT OR THAT YOU KNOW THE SECRET TO FIXING IT. YOU DON’T. GO AWAY.
Also, call me selfish, but I work damn damn hard for everything I do. I did that. I’m not waiting on something else. It’s action and decision on my part. I’m bloody taking credit.
One of the reasons I’m so passionate about this topic is because people who are desperately ill and fighting it will look to anything for answers. I did. Lots of people do.
This makes them vulnerable to charlatans (ooh, I like that word, not so much the people) who will take advantage of this desperation for financial gain, offering false solutions and false hope to real problems. By going down this path, people are also losing out on safe, researched treatment. All of this can cause emotional and physical harm, which is why I get really upset when I see young girls on Instagram falling prey…especially when (like for many of us) the medical options are currently extremely limited.
And while I’m here…
Do not tell me that God, The Universe, Or Some Other Deity That I Can’t Be Bothered To Invent Right Now wouldn’t have given me something to cope with that I couldn’t handle
Do you think I want to have to cope with this? Fuck no.
Has having these illnesses made me a stronger person? Most probably. But in reality, what does that even mean?
Everybody copes in different ways, and what works for me, probably won’t work for a lot of people. I think that a lot of it has a lot to do with our personalities and the support that’s available to us. I recognise that I’ve been incredibly privileged with all the support and treatment I’ve had over the years.
And you know what? Sometimes I can’t cope.
A common refrain I hear from believers of all stripes is that I wound’t be given this if I weren’t able to handle it. Dude, I got this shit when I was 9 (more accurately, that’s when symptoms started). Why is it part of a grand plan for a child?
Babies are born severely unwell. People have accidents. People get assaulted. A lot of things happen to them, and I find that argument incredibly…I don’t even have the words. Just no. It’s on the same level for me as “remember, other people out there have it worse than you”.
To the unbeliever, this serves as no comfort, and can even feel like an attack, or like the other things above, a judgement on your choices. As Emily McDowell says:
“Here’s the thing about “God’s plan.” Much like “everything happens for a reason,” some people find this belief to be genuinely comforting. But when you’re in the middle of something absolutely terrible and tragic and your whole world has fallen apart, it can be a really maddening, frustrating (and sometimes throwing-things-inducing) thing to hear. Like, really? Was this the best he could do?”
As I said in my intro, if you find this stuff comforting, good for you. I’m semi-jealous. But don’t assume that just because it serves as that for you, it will for me. Think about the person you’re talking to before you say things.
Here’s the thing
Some of you may think that I’m overreacting, and that’s fine if you do, because at the end of the day, I’m here to write about the things that affect me. And whether I like it or not (and I really really not), the sheer number of messages I’ve received over the years has started to wear on me.
I love sharing how I try to navigate my life, because I think it’s a way for people to better understand the realities of invisible disability (after all, if we don’t write about it, who will?) and I’m really glad that sharing my stories has helped other people in similar situations.
I know that I don’t have the world’s biggest following, but that doesn’t matter to me. I’ve been really lucky that people have been able to connect with me, and I hope that I can make a small difference. That’s why I write (also, as I’m sure you can tell here, it’s also for the catharsis). But I’m not asking for opinions on how I should live it, and I’m not sharing because I’m looking for someone to come and fix me.
I’ve worked so hard over the years to get to a place where I’m incredibly proud of the things that I’m doing (and I’ve got some really exciting news to share soon!) Accepting that my body is never going to be able to do the things I want it to do, as well as learning to live with nearly intolerable pain and fatigue that I never get any relief from is really fucking difficult. So when I have people messaging me telling me that I’m not doing enough, or that I’m essentially responsible for how I’m feeling, it breaks my heart a little bit.
I’m not responsible for my conditions, and my conditions cannot be cured. And constantly hearing otherwise slowly (and sometimes in a rush like this week) breaks down my confidence, makes me question myself, and brings up feelings of blame and insecurity.
And that’s not me. And that’s not fair.
I know this is probably a messy jumble, and I’m deliriously tired, but I wanted people to think a little bit about how they treat other people online. What you think is helping, could be hurting. The language you use is important, and not everyone believes in the same things you do. You don’t know the consequences of what you’re saying.
Don’t try and cure someone or offer them help or advice unless they’ve asked for it. If you really care enough, work to make things more accessible in your local area.
And above all, please just be kind and respectful to others. Ok? Thanks