10 Things Not To Say To Chronically Ill People - And What To Say Instead

10 Things Not To Say To Chronically Ill People – And What To Say Instead

Having a chronic illness can be a bit of a minefield in itself. I’ve been thinking a lot about things that people say that isn’t helpful and what could be said instead.

A lot of the time people don’t intend to hurt someone’s feelings when they say these things but when you’re already fighting with your body 24/7 the words of someone else can make it that bit more difficult.

So, I thought I’d write a handy guide from my perspective about things not to say to a chronically ill person and what you might be able to say instead.

But you look healthy!”

First of all, thank you. Second of all, ‘looking’ healthy can take a lot of effort. I have showered, sorted my hair and maybe even put on some make up most of which makes me tired. There are many invisible illnesses, just because you can’t see it doesn’t mean it’s not there.

Instead, you can comment on how great someone looks without mentioning the illness – everyone loves a boost!

You should exercise more, that’ll help

Believe me I would love to be able to exercise every week without fail. Before my accident I was horse riding at least once a week and probably in the best shape I’ve been in as an adult.

The fact of the matter is I can’t do that anymore. I have to weigh up what I’m doing that week (Do I have any big deadlines? Do I need to go somewhere for work or with friends?) with the kind of exercise.

Currently I’m trying to do something every week but when every part of me hurts like I have the flu simply walking around my flat can be pretty painful. That said, I do try and get light exercise in no matter what.

Instead, why not ask them what activities they enjoy, if they’ve found anything that helps them and offer to go with. Some of my friends are excellent at this – we might go for a light work out together and I’ll just take a book so they can carry on if it gets too much!

Have you tried going to bed earlier?

Really Susan? I hadn’t thought about going to bed earlier to be less tired! Can you detect the sarcasm? Fatigue is a bit part of some chronic illnesses. When I’m in a flare I could sleep for 12 hours and still wake up feeling exhausted. Even when I’m not in flare if I have a busy weekend socialising I probably won’t be back to my version of normal for about a week.

Instead, maybe just don’t question their habits. It’s a bit of a dick move.

How come you can go to work/go out but you can’t come to my thing?”

I work because I need money to live. If I’m low on energy that’s my priority. Next question Janet.

Instead, be understanding let them know that it can’t be east to try and manage expectations and maybe recommend doing something together that’s less energy consuming.

You’re so boring”

Here’s the thing, when you’re chronically ill you might not have the most exciting life. I know that normally I’m in my pjs by 7pm if I can be just to be comfortable.

I know that for me, personally, being called boring drives me mad and sometimes hurts my feelings. I miss being able to do fun things and not think about how long it will take for me to feel better after doing any kind of activity.

Instead, have a bit of empathy, c’mon.

You’re too young to be ill/ have that illness.

HAHAHAHAHA. I wish! I get this a lot and I know some of my fellow spoonies do too. I’ve had old people look at me in disgust with my walking stick and people eye me suspiciously and refuse to give me a seat on the tube.

Being chronically ill can impact anyone no matter what their age and because, without make-up I’m told I look 17 it does not help my case. Either way, age has nothing to do with it.

Instead, ask polite questions if they’re ok with that and ask them how it feels to be chronically ill/disabled by an illness at a young age. Also if you hear someone else making this comment, sassy replies are appreciated.

Have you tried…”

People love to recommend things to those who are chronically ill and most of the time they want to help but sometimes those recommendations can be a little ridiculous. What worked for your brothers, nephews, girlfriends turtle probably won’t work for me.

Instead, if you have heard about something they might not have – think about how you phrase it. It’s all about the phrasing, try saying something like – “I heard about this thing, it made me think of you I don’t know if it would be of any benefit?” That way you’re letting them know that you respect that they know their own body.

Think positive!

I try my damned hardest to be positive where I can but living a life full of pain definitely wears you down. Telling someone to think positive can not only be irritating bust also hurtful. Think about why they might be so down and how you can help before saying it. Also word to the wise, comparing it to another illness is also not a reason to be positive.

Instead, let people have their moment – life with a Chronic Illness can suck! But also remind them of the things they’re good at, you can feel totally useless when you’re in flare.

I know how you feel “

Unless you have a chronic illness, I’m sorry but you don’t. As much as people are trying to be empathetic here it can be so frustrating. You might be tired/ aching/ feel run down after the weekend but I promise you it’s not the same.

Instead, ask them if there is anything you can do to help or if they want to talk through stuff. Or just acknowledge that you don’t know how they feel exactly but you can empathise.

Don’t take XX/ Does medication really work?”

Ah, commenting on someone else’s medication or treatment plan. This is a big one that, again, is often well meaning. A lot of the time people have heard horror stories of a certain drug and some don’t believe in taking medication at all.

From personal experience finding a medication that even remotely helps your symptoms can take a long time and causes a lot of side effects. For me alone I’ve had to try medication that has made me vomit, have headaches, increased my anxiety to the point of having panic attacks, have heart palpitations, night sweats and lots of other wonderful things.

Instead, if you really want to talk medication ask them about their experiences but honestly? I’d just leave it alone – it’s a deeply personal thing!

Is there anything you’d add or do you have any questions? Leave them in the comments below!

Heading To The Aisle: Finding Your Venue

I’m back with a bit of wedding chat – hooray! Now, things have ramped up at little bit since I last wrote about feeling overwhelmed about where to start and what to do. We now have a date, a registrar and a venue, yep check me about! I’m going to become a Mrs on the 16th January 2021, eek!

With no doubt one of the biggest things is getting your venue right. When we got engaged I was reluctant to look at any big venues, I was worried about the money we would spend but thanks to a bit of gentle nagging my Mum got me to visit two of the bigger and more impressive venues in my hometown and, don’t tell her, but she was completely right.

To say I’m in love with my venue is an understatement, I got a gut feeling as soon as we walked up that this was the place for me. The first time I saw it I went with my Mum and got a full tour – I’d recommend going on an open day/evening as they will set it up for how it may look for a wedding.

My wedding venue!

There are a million posts online about what questions you should ask but my main advice is ask about things that are important to you as well as the boring admin things. For me the important things were that the ceremony and evening were at the same place, accessibility, the guests rooms and what we would be eating, for Ali the sound, the way it was lit and layout were important.

It has to be said that without our parents wanting to help us I would have set my sights on a smaller venue. I’m aware how lucky we are that our parents want to help. That’s something I will say, don’t assume either way. I didn’t want to assume our parents would help, so I didn’t look at the beautiful venues. Have a conversation with everyone involved and see where things stand – you might be pleasantly surprised.

Really, your venue should make you feel happy and comfortable. I could visualise myself saying I do in the room where our ceremony will be held. Also, take your time! I only booked ours so quickly because I knew it was right for us, if you haven’t found it yet then take your time to look around and see what’s available.

My YALC 2019 Haul – Part 1

Another year, another amazing time at YALC. If you’re not part of the bookish community in the UK you might not have heard about the Young Adult Literature Convention. Let me tell you it is a treat! A big hall full of panels, authors, publishers, freebies, giveaways and Jason Mamoa sightings. The event is part of London Film and Comic Con and probably my favourite weekend of the year.

This year I decided my posts we going to be all about the books, partly because I came home with 25 new additions (hey! they do great deals) and partly because I was a terrible blogger and took hardly any pictures at all. Not only did I come home with a stack of books but I also met the amazing V.E Scwab (she signed for over 400 people, I was number 362), finally met the lovely Lucy Powrie who wrote The Paper and Hearts Society and Laura Bates a badass feminist who wrote Everyday Sexism, Girl Up and Mysogynation.

It was an absolute dream but let’s get down to what you’re really here for – the books.

I hit up the Barrington Stoke stand and picked up these books. You’ll be hearing a lot more from me about Barrington Stoke – they produce books for young adults with Dyslexia that are actually for young adults.

I picked up The Disconnected by Keren David which is about winning a large sum of money if you can stay disconnected from your phone – perfect for a social media obsessed person! Next up I picked up The Last Days of Archie Maxwell by Annabel Pitcher, which is family centred and gritty from what I’ve been told. And I was also gifted a copy of Firebird by Elizabeth Wein which is set in Russia during WW2. All of these are shorter reads and I’m looking forward to getting through them

Let’s just put it out there, I’ve never read an Adam Silvera book. So of course I bought 3 – What If It’s Us with Becky Albertalli, They Both Die At The End and History Is All You Left Me. I’ve heard really good and emotional things about all of these books so hoping I love them all! I am ready to cry a lot.

I’d not heard of Can Everyone Please Calm Down: A Guide To 21st Century Sexuality before this weekend but it looks like an interesting read. I’m always keen to read more books about sexuality and learn. Next up is The Black Coats by Colleen Oakes a story about a group of women who go after men who hurt women. I’ve wanted to get my hands on this for a little while so it’ll be interesting.

I also picked up another book by Moxie author Jennifer Mathieu – The Truth About Alice. This is a novel about rumours and thinking about what we really know about what we hear? I’m really looking forward to this one.

I also picked up Apple and Rain by Sarah Crossan after buying Moonrise at YALC last year and absolutely loving it – the blurb says it has the power to make me ‘laugh and cry’, I’m here for that. Next up is The Stolen Ones, set after WW2 with a mystery element – is Inge who she really thinks she is? And I also picked up You Got This by Bryony Gordon, I love Bryony’s other books (The Wrong Knickers and Mad Girl are the two I’ve read) and this is all about positivity.

And that’s not all! Make sure to come back tomorrow to see the second half of my YALC book haul!

My5 YALC 2019 Book Recommendations

My 5 YALC 2019 Book Recommendations

YALC is fast becoming one of my favourite events of the year a whole convention of bookish people. My kind of people. Last year I had such a great time I had to split my post into 2, part 1 was about the day itself and part 2 was my huge haul. This year I’ll only be going on the Saturday but with 3 days of amazing authors I wish I was going for all 3, maybe next year I’ll treat myself.

Here are 5 books and authors that will be appearing this year who I highly recommend checking out.

Heartstopper Volume 1 & 2 – Alice Oseman (appearing Friday)

Alice Oseman is an incredible writer with three novels under her belt, one amazing graphic novel and her second graphic novel out in July she is killing it. Aslo after following her on social media for the past year she seems like a lovely person too.

Heartstopper is a sweet story of two guys falling for each other and is one of the most wonderful graphic novels I’ve ever read, review here. It has all the heart and feels you need and as I write I have volume 2 staring at me to devour once I’ve finished writing this (see, always thinking of you guys first). Also her novel, Radio Silence is one of my favourite YA novels.

The Paper & Hearts Society – Lucy Powrie (appearing Saturday)

The lovely Lucy Powrie announced her first novel and the promise was a novel about books and friendships. I was gifted a copy by the publisher to give a review after requesting it.

If you like to read about bookish love, friendships and tackling anxieties. You can read my full review here.

The Exact Opposite of Okay & A Girl Called Shameless – Laura Steven (appearing Friday)

Ok I might have slipped 2 in here but they are part of a series and I love them equally. Laura Steven is one of my favourite YA authors and these two novels are absolutely hilarious. Fun, feminist and fiesty I don’t think I could recommend this more.

You can read my review of the first book The Exact Opposite of Okay here.

One of Us Is Lying – Karen M McManus (appearing Saturday)

This was an excellent thriller that I read back in 2017, think The Breakfast Club with added murder. I absolutely loved it, I haven’t gotten to her latest release Two Can Keep A Secret.

If you’re looking for a good thriller I’d recommend picking this up before the next in the series comes out. My review is here.

The Year I Didn’t Eat – Samuel Pollen (appearing Sunday)

I was asked earlier in the year if I’d like to be sent a copy of Samuels debut novel about a young boy with an eating disorder. This is a really important book that I hope does well because it truly deserves to.

We’re really lacking in YA books with male protagonists who have eating disorders, I can only think of two I have ever read. You can read my full review here.

What are you looking excited forward to at YALC this year? Have you read any of the above? Let me know in the comments below!

Book Review: The Hormone Diaries: The Bloody Truth About Our Periods – Hannah Witton

If you haven’t noticed, I think Hannah Witton is a great YouTuber and also seems like a lovely person. I’ve watched her channel for a few years now and loved her first book, Doing It so when she announced a book tied to her series The Hormone Diaries, I was in.

The book is a great mix of informative and funny with some great notes from Hannah around the edges. While this is definitely aimed at an older audience (hooray!) I still learnt so much, and this is from someone who’s been having periods for about 12 years at this point. There was so much I didn’t know!

Covering letters from Hannah’s followers around the world they addressed to things you might not expect like, ‘Dear my period’, ‘Dear my pill’ and ‘Dear menstrual cup’ . While it is amusing it’s also great to see so many experiences of hormones, contraception and the like. I found myself laughing, sympathising and nodding along the whole way through this book.

What I didn’t expect to feel when reading was powerful. I wanted to get up and shout I AM A MENSTRATOR because, if you think about it, we’re pretty badass. And although, in my opinion, periods are shit, most contraception is a nightmare and the thought of giving birth makes my vagina scream in protest – our bodies are bloody marvelous.

This is probably the most inviting book I’ve read in a long time in regards to the gender spectrum. Hannah doesn’t just assume that everyone who has a period identifies as a woman. She has used inclusive language throughout which is definitely the way forward. While I’m a cis female I can understand how this can be a big thing for others. Go Hannah!

It’s worth pointing out that thanks to Hannah and her book I’m now part of a wonderful group on Facebook where we all talk about hormones and periods. It’s fantastic and I’m so glad so much conversation has come out of this book – and will continue to!

Is it any surprise that I gave this 5 stars. A great book and, once again, Hannah has pulled it out of the bag. I highly recommend this to anyone who gets a period or has to battle with estrogen on a regular basis.

The Internet and Introverts

The Internet and Introverts

To put it simply, the internet is my life. Yes I am fully aware that sounds strange but hear me out. I was born in 1994, by the time I was 4 we had computers in the classroom, ICT lessons were a part of my education – we grew up online.

I’ve built a job for myself from my love of the internet so, really, it is my life. But it’s also given me more than that – it’s given me the chance to interact with others as in introvert. I can talk to people from all over the globe, I get the majority of my clients online, whereas I don’t know if I would do as well going out and talking to people constantly.

I know that there are so many people, some of you reading this even, who feel like they can be themselves online. Hell, I know I can. I can spend my time talking about books, about mental health, about anything I feel like and find others who want to talk about it too. It’s a good feeling.

At times when I’m lonely I can hop on to a Twitter chat and talk to other people who, like me, might also be at home alone on a Friday night with not much to do but still wants to do something. Likewise there are times when I feel alone or I might be struggling with something, there will be someone else who feels the same or similar.

While most people who read my blog can’t believe I’m introverted, nor can some of my family members, I find trying to interact with large groups of people so exhausting and I can’t fake enthusiasm when I’m exhausted, but I do get lonely. It’s a great solution.

Are you an introvert that uses the internet? I’d love to hear from you below!

What I Read June 2019

What I Read in June 2019

Hello, hello, hello!

June turned out to be a fantastic month for new releases, out of the 8 books I got through, half of them were new and I loved all 4! So, let’s crack on with what I read in June.

First up, Saved as Draft by N.D. Chan this was send to me by the publisher via Netgalley and is a mix of poetry and prose on their own relationships. I gave this 3 stars, while there were parts I enjoyed it wasn’t that memorable for me.

Next was a book I knew I needed as soon as I read, Royals – now renamed Prince Charming, the first in the series earlier this year. All I will say is enemies to lovers with a bisexual protagonist. It’s really sweet and I read it in a matter of hours – 5 stars.

It’s been a really long time since I read Harry Potter and the Philosophers Stone and I used to read it every summer growing up, I was feeling a bit down so I thought going back to one of my favourite books of all time was a good idea. I fell back into the world and of course it’s a 5 star read. Duh!

I also picked up some new poetry in June, now I will admit this was a cover buy. It is such a beautiful cover, I couldn’t say no. This Is The Journey was great introduction to Alison Malee, I’ll be trying her other works to see how I get on, I gave this 3 stars.

I listened to Phoebe Robinsons second book Everything’s Trash But It’s Ok after loving her first last year. Phoebe is absolutely hilarious but also has some great points about burnout, body image and recent politics. I’d highly recommend the audiobook because Phoebe is hilarious, 4.5 stars.

Also this month (a great one for new releases) was the amazing Hannah Wittons latest book The Hormone Diaries – The Bloody Truth About Our Periods. This was an excellent look at hormones, periods and sex and once again Hannah has done a great job, 5 stars and a review coming soon!

My final two books I didn’t think would make it by the end of the month that drove me INSANE because they are two of my most anticipated reads. Red, White and Royal Blue is one of the best, sweetest and most wonderful books. It’s up there as one of my favourites. The fictional First Son of the United States falls in love with the Prince of Wales. If that doesn’t pull you in I don’t know what will.

And finally some of my faves, The Try Guys , released their first book The Hidden Power of F*cking Up which went right in as a New York Times Number 1! This book is all about trying, failing and everything in between. I love their Youtube channel and they have done so well in the first year of a new business, a tour, a book. They are on FIIIIIIIRE! 5 stars, it really made me think about what I was doing with myself and how important failing is.

A good month for reading I think! What did you read? Let me know in the comments below.