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Stop Trying To Cure Me Of My Chronic Illnesses

chronic-illness-card

Image Credit: Emily McDowell Studio. [Image reads: Please let me be the first to punch the next person who tells you everything happens for a reason]

Hello Internet,

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.

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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.

Enjoy!

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

Seriously.

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

20 Comments

20 Comments on Stop Trying To Cure Me Of My Chronic Illnesses

  1. Michelle
    July 7, 2017 at 9:34 am (5 months ago)

    I think my favourite (repeated) comments was from a man who said I was unwell because I was too “sedentary”.

    His view didn’t annoy me so much as he clearly didn’t read my website very well or look at my about page, which outlines all the things I do to keep busy and active, I don’t sit around all day and even if I did, I shouldn’t be judged for that. There are lots of people who have no choice in this and it’s unhelpful to guilt people about how they need or want to live. Life with illness is hard enough without (usually able people) passing judgement.

    Oh, if only I moved around more, it would solve all my problems right?? Haha.

    Reply
    • Natasha Lipman
      July 7, 2017 at 9:35 am (5 months ago)

      I mean, obviously. I mostly sit around all day…but that’s because I have to…I move as much as I can, but it’s often really limited.Shockingly, not the reason I’m not better. Le sigh!

      Reply
  2. Sandy
    July 7, 2017 at 1:09 pm (5 months ago)

    Hurrah! Absolutely, the idea that I (or my son, who has autism) need ‘fixing’ is dehumanising. I *am* a follower of Jesus and I do believe that people can be healed, but mostly they are not and getting on with life as it is is what is most important. Life is not fair – let’s acknowledge that and get on with it instead of trying to avoid the uncomfortable truth. Also, the implication that whatever is ‘wrong’ needs fixing (and the subtle, often unspoken implicit ‘you must not have enough faith – or whatever) is cruel. As my beautiful boy once said, in a moment of penetrating insight for someone with quite severe learning disabilities, “I am not autism; I am me!”

    Reply
  3. Silvia Logan
    July 7, 2017 at 7:38 pm (5 months ago)

    Natasha, this is a very touching blog. What you are saying is absolutely true. I hear stories from the Internet that terminal cancer on people, dogs, and cats can be cured naturally by using natural and holistic treatments such as organic raw vegan and fruit diets and no meat, eggs, dairy, fish, poultry, and desserts, vitamin B17 supplements, juicing, yoga, meditation, essiac tea, baking soda, wheatgrass, mistletoe, and all the other alternative treatments and when they tried those treatments, their cancer disappeared immediately and never came back. How can you possibly prove that they had cancer the first place? For all you know they could had been misdiagnosed. To me diet does not cure a person from physical and mental diseases.

    Reply
  4. Richard Wood
    July 7, 2017 at 8:39 pm (5 months ago)

    Hi again, I’ll keep this simple (I seem to be good at being simple) your right, not everyone one perfect so why try to correct everything, I mean I have a few issues that haunt me, but I just say “hey I’m me, if you don’t like that F-you” keep going and educating the idiots, Richard x

    Reply
  5. Donna
    July 7, 2017 at 10:06 pm (5 months ago)

    I think the biggest thing for me is that in telling someone that they just have to do x,y or z they are effectively projecting blame and shame onto someone’s situation. How is that helpful? Like you say, it’s done in a way that insists the person who is chronically ill isn’t trying hard enough. I always feel like it minimises all the things I do for myself– coping mechanisms, treatments I’ve explored, etc. Because, personally I’ve found it hard work to get to the place where I am. It’s a full-time job in a lot of ways. I’ve been made to feel like all I’ve achieved isn’t good enough and that’s wrong and unhelpful on so many levels. I completely understand where you are coming from. And I fully agree that acceptance does not equal a loss of hope or giving up. Rather I feel it allows us to live life as best we can with our current limitations. That’s far more meaningful than pressing pause and hoping and waiting for the what ifs to come true.

    Reply
  6. Kaalyn
    July 7, 2017 at 11:06 pm (5 months ago)

    I shared this sentiment on Twitter, but I think the MOST insulting parts about “everything happens for a reason”, “Jesus will heal you”, “God is good” and *physically touching me to heal me* are how many OTHER things that statement implies. It may be comforting to many, but there are COUNTLESS hurtful implications hiding in it that are anything but loving.
    .
    One: It implies that a good, loving Jesus didn’t care about me when I was born and will only heal me now bc YOU are praying for me now. (Many of my conditions were caused by being raised in a child exploitation ring and was tortured – other from birth.) To suggest God is good and will heal me now suggests he was completelyyyy okay with the torture that would inevitably put me in this place physically. So, he’ll just “fix it later” then? If he was capable of healing me, why didn’t he do so decades ago? It almost HURTS to think that a loving god would allow me to suffer soooooo senselessly if he had the power to cure me all along. That stings.

    Two: It implies that I wasn’t spiritual or godly enough on my own. It took the prayer and faith of a stranger to call on his greatness. How do they know I wasn’t a deeply spiritual person praying every DAY to be healed?? I’m not now, but as a kid, that’s all I DID. Endlessly I cried out to god/someone to save me. They never came. I did all the right things and lived in terror of messing up bc it was my only shot at being saved. To suggest your blessings and attention will change that implies that MY heart, MY pleas, MY faith, and MY relationship to god wasn’t enough. I wasn’t good enough, pure enough, dedicated enough to get the blessings of the lord. Again… that HURTS.

    Three: If everything happens for a reason – please – by all means tell me a great enough reason that could possibly warrant almost 3 decades of torture. ESPECIALLY IF YOU WANT TO CURE ME TOO. If it was just “developing character” “making me stronger” “making me who I am today” – why do you also want to FIX me??? But, not only that, I could’ve developed a shit ton of character and personality w/o all this physical agony. ….and been better able to BE a voice for the hurting if I wasn’t so inhibited. No, there’s no reason great enough for this suffering. And, again, it makes me feel like I did something wrong or bad to have been the person supposedly chosen to go through this. And the bullshit of “Well you were chosen bc you were strong enough to fight it.” — what about all those who weren’t strong enough but were “chosen” to fight this ailment, too? …who committed suicide bc it was too much? Were they not “strong enough” or was it just mindless torture for no benefit? No matter how you spin that argument, someone end up hurt. This one can almost break my heart when I think of everyone living in pain “for a reason”. There isn’t one.

    Four: False hope. Making me search and aim for a cure, “a reason” or a healing just makes me pine for relief that will never come. It took us forever to accept this is how we’ll be and there wlll be no quick fixes. Please don’t give me false hope I could be well. Because in 3 wks when I’ve never seen you again and I’m still unwell, that gesture now just makes me sad.

    I feel like I’m a much more patient person than many and really try to hear the INTENTION behind these ridiculous words. But even I can be so discouraged by them after the exchange is over and I’m on my own. Also, there is a VERY distinct different in offering REAL help or new, education information about a person’s condition they might not have yet that could actually be helpful, in a communal give-and-take way, and just shoving random non-applicable ideas at someone out of ignorance. Kindness + ignorance, but still a shit ton of ignorance.

    Excellent post. I really hope more people read it.

    Reply
    • Richard Wood
      July 7, 2017 at 11:19 pm (5 months ago)

      I love that, a shit load of ignorance! If we could cure by touching, why do we suffer on mass? Sudo miracles are too good to be true, and as they say, if it seems to good to be true, it’s bull shit x

      Reply
  7. Tania
    July 8, 2017 at 10:56 am (5 months ago)

    So many fantastic and well thought out points here. I was nodding along to every single one of them. Thankfully, I’ve not had many experiences of people trying to ‘cure’ me. But I do still get quite frustrated by the way people word things. I received an email recently from someone wanting to work with me. They were very complimentary about my blog, but then went on to say that I’m someone who understands the importance of a migraine-free life. In those three words, I felt that they didn’t understand me, my blog or what I stand for. I haven’t been migraine free since I was 11. I will never be migraine free. But I choose to live positively with a constant migraine. So the ‘migraine-free’ comment stung.

    I was once picked up from an appointment by a taxi driver, because patient transport were busy. He told me that if I prey hard enough, God will heal me! I found this not only insulting to myself, but also insulting to my God. The insinuation that I’m in a wheelchair because I don’t prey hard enough is quite frankly ludicrous.

    I really love your comments about respecting each other’s beliefs. I once wrote a three paragraph comment on a YouTube video, one line of which included a reference to my personal religious beliefs in relation to my chronic illnesses. I made it very clear in this that they were my opinions. These views are the basis of Christianity, weren’t aimed at anyone and were in response to the specific mention of how some religious people (like my taxi driver) treat a disabled or chronically ill person. Another person watching the video verbally attacked me for this one line. She wrote some really nasty, vicious and ableist things. It was horrible. Respect is so important. I’m all for having a discussion about differing views, but there really is no need to attack someone because they are both Christian and chronically ill and/or disabled.

    Thank you for such a well thought out post. It’s great to know that I’m not alone in feeling that people with a ‘cure’ need to fuck off, because if my world class consultant can’t ‘cute’ me, no amount of prayer/diet/unicorn blood will. Xx

    Tania | When Tania Talks

    Reply
  8. Jean
    July 8, 2017 at 6:46 pm (5 months ago)

    I must say you are a grand writer. My niece has Lehlers Danlos syndrome. I am a strong supporter for her. We don’t talk about her death very often. We mostly talk about what she is trying to accomplish before I loose her. Your blog is so inspiring. I hope your day is going ok.

    Reply
  9. Anderea Dexta
    August 13, 2017 at 4:29 pm (4 months ago)

    hey , leave those pastors​ who say that believe, here you will be cured of your chronic illness . I’m sure that you will live a normal life and do your work well and the bad thing you blocked me from all your messaging services but why, do you want people to feel sorry​for you, no one wants a bad life. the one seek for it finds it. I want you to know that your illness is consuming your time, years , .. I want you to know that you can be healed to normal .. for more information contact me

    Reply
    • Natasha Lipman
      August 13, 2017 at 5:35 pm (4 months ago)

      Anderea,

      The fact that you commented this on a piece that I wrote specifically stating how unwelcome unsolicited advice is, is quite extraordinary.

      I blocked you (on multiple channels) because your messages were unwelcome. One was enough, the onslaught was too much.

      I don’t want anyone to feel sorry for me. I talk about the realities of my life with chronic illnesses. These are conditions that, as of yet, cannot be cured. It’s unfortunate, and I do struggle, but the biggest issues I have are from society as a whole.

      I do not believe in God. You do, and that’s your prerogative, but quite frankly, it’s not your place, or any of your business how I choose to live my life. Why you’re so obsessed with trying to cure me is quite frankly beyond my understanding. You do not know me, so let me tell you again. I do not believe in God. I do not believe that I can be cured by God. And you know what? Science has my back. Read down in the comments – there are people who are religious that find their belief a helpful coping mechanism, but guess what, it did not cure them.

      Please learn some empathy and think about your behaviour before reaching out to people you don’t know on the internet. It has taken me a long time to come to terms with the fact that this is the reality of my life, and I shouldn’t have to deal with strangers like you on top of that.

      I respectfully ask that you stop messaging me, and maybe read this piece again to understand why.

      Reply
      • Richard Wood
        August 13, 2017 at 6:03 pm (4 months ago)

        WOW 😳 some people won’t listen, that’s what religion does to some, believe me not everyone feels sorry for you, we all have issues that can blight our lives. My opinion is simple, if someone needs my help, I offer support as best I can, I haven’t got time to study people and make judgements, anyway I’m not very good at judgement, I tend to get it wrong so stay well clear. As I said keep it simple and smile as much as you can xx

        Reply
    • Kaalyn
      August 13, 2017 at 5:41 pm (4 months ago)

      Amazing how in ONE paragraph you managed to advertise to literally EVERYONE reading why you’ve been blocked several times. If her illness is “wasting her time”, your obsession with stalking and preaching to her is wasting YOUR time.

      Reply
  10. Mattie
    August 13, 2017 at 10:39 pm (4 months ago)

    Anderea,

    Are you kidding? GENETIC disorder. This ain’t a broken ankle or some fake illness that you can wave a bible over and fix. You take your healing magic bullshit and go bother someone who may actually believe it.

    I was stuck in the ‘born again’ movement for 6 years. Six long horrible years of spiritual abuse from the churches (MULTIPLE CHURCHES) and physical/emotional abuse from my ex who brought me into that den of lies.

    I saw MANY revival meetings with supposed cures. One of them claimed to have healed a part of my chronic condition. Lies. Not ONE person was really healed. Sure, they all fainted and fell into waiting arms like the good showman expected and spouted out gibberish words that they all called “speaking in tongues”. Not one person “stayed healed”. One died of her cancer three months after the “cure”. She had stopped her cancer treatment because she believed. That was the worst of them, others still kept their arthritis, their scoliosis, their rashes, whatever.

    You’ve been asked more nicely than I could have ever done to stop touting your faith healing. You’ve been blocked on multiple platforms. How about you have some respect and leave her alone.

    Reply
    • Natasha Lipman
      August 14, 2017 at 8:08 am (4 months ago)

      Wow, thank you so much for sharing this, Mattie. I’m so incredibly sorry that you had to go through this experience. I’ve only ever heard of things like this, never seen it (we don’t really do so much of this stuff here in the UK). It’s so incredibly sad to hear, and the abuse that people suffer at the hands of people whose ‘belief’ makes them lose any empathy or consideration for other people.

      I’m so glad that you came out the other side. Sending you so much love.

      Reply
  11. Kitty
    August 14, 2017 at 10:20 am (4 months ago)

    Anderea, your smug religious certainty is actually quite stalkerish. I won’t chase you down all over the Internet, “Godsplaining” or “Yogasplaining” or “Thinking that I know better splaining” because it would be rude and condescending to think that I knew a person better than they know themself and because listening and learning from people’s stories and experiences is the key to inner growth and furthering yourself, not talking over them. I am truly happy for you that you are so sure of your god and that that belief brings you comfort but does it bring you inner peace? A truly happy person can empathise and learn about others experiences and it enriches them-they stay safe in their own worldview but stay open to others views and always wish to learn more. Natasha is sharing her experiences, not for pity but for solidarity (because being born with a syndrome that has wide ranging issues is one that a lot of us can either relate to or learn from. I also have EDS and other health stuff that makes me enjoy her writing and recognise her experiences but I also follow the writings of bloggers *totally* unlike me, so as to learn and grow…and we have more in common than differences most of the time, tbh). Sit back for a few minutes and think about what it is that’s making you do this and then pray on it if that’s your thing, or just think about how we-none of us-have the right to a sort of “Colonial rule of the emotions and beliefs of others”. The wonderful thing about the human experience should be our *own* inner journey and lifelong learning…and that’s a journey for one. X

    Reply
    • Richard Wood
      August 14, 2017 at 1:41 pm (4 months ago)

      Hi Kitty, perfect comment life’s inner journey being for one, I feel that way and have spent my life beating myself up, I always thought it’s the collective that counts, well that’s what was drummed into me, I arrived alone and will die alone, only luck and hard work will give me true loved ones to share my life with xx

      Reply
  12. Jule
    November 9, 2017 at 9:07 pm (1 month ago)

    Ditto to everything you said! Way before I got ME/CFS, I grew up with well-meaning people, and others who were aggressively a-holes, trying to convert me, in this case because I’m Jewish. Our rabbi stated repeatedly that one’s relationship with God (or lack of in my case) was between you and whatever deity. What kind of person you are and how you treat others was the only criteria that matter in life. Consequently, I am highly allergic to people pushing their agenda on to me. To me that says more about the person trying to sell their cure, philosophy, solution as opposed to really trying to help anybody else.
    Bravo to your entire post Natasha!

    Reply

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