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!

A Typical Day For Me With Fibromyalgia

Of course, with the magic that is Fibromyalgia a bad pain day means these can be completely wiped out, I might get up earlier or later – squeeze in a nap if my sleep has been poor

8am – I’ll set an alarm for a hopeful 8am start and depending on how I’ve slept the night before I get up. Although, if you ask my fiancé I lay in bed after my alarm and it’s super annoying…oops.

8 – 9am – Waking up is normally when I’m at my most stiff so it can be quite painful. My priority is getting up, getting the hamsters fed and having some caffeine while catching up on some YouTube videos. If I’m feeling okay I’ll also get in a morning shower.

9 – 10am – Most of my freelance clients work 9-5 and while I do have more flexibility I try and log in between 9 and 10 so they’re not waiting too long for a response. Equally, the quality of sleep I’ve had can hugely impact how quickly I can work and how foggy my brain is.

Writing my to do list for the day is really helpful to get an idea of where I’m at and what my priorities are. I also will check all my social media, including LinkedIn for work.

10am – 1pm – This is where I’ll get my main bulk of the mornings work done, also *at least* one more caffeine break. I’m all about the tea guys!

I’ll also need to try to get up and move around because my joints will get super sore despite trying to work in comfy clothes with pillows. That said, I’m normally much more alert and able in the mornings so I’ll get the most challenging work out of the way then.

1 – 2pm – Time to take a break. When I’m working at home I can eat and work so it’s not normally an eating break instead I might take a shower, pop out to get something or go over and see my Mum to get some company.

2 – 5pm – Time to reevaluate the to do list and check in with how my body is feeling. If I’m feeling good I might add a few more things to my to do list or know I’m on track. On the other hand if I’m struggling I have to prioritise what needs to be done. This is something I’m still working on because in my mind everything needs to be done, most of the time they are self imposed deadlines.

I also might move over to working on the sofa if I’m in a lot of pain. I know a lot of people advise against this for freelancers but at times it is literally the only way I can concentrate. Pain takes up a lot of brain space!

5 – 6pm – I’ll finish working normally between 5 & 6 this is where it can get risky, I’ll normally lay on the sofa and try to chill out – occasionally I will fall asleep again, a ‘danger sleep’ because it can throw my sleep pattern even more out of the window.

6 – 9pm – General evening chill unless I’m meeting a friend, which I try and do at least once a fortnight. Occasionally I will be catchin g up on some work. I love my job and I’m not that good at completely switching off.

I’ll have some dinner with Ali, play with the hamsters and normally work on the blog while watching some YouTube or Netflix. Wild times.

9 – 11pm – Random burst of energy you say? Yep if I’ve been at home all evening it will hit me here. If I’m not too sore I’ll try and do some light exercises around this time to make the most of the burst and *hopefully* help me to sleep.

11pm – 1am – At some point I’ll take myself off the bed hoping I’ll get a decent nights sleep. While some days I will be snoring within a few minutes, others I can be awake until 1am or later not able to sleep.

Do you have Fibro? I’d love to hear what your days look like below!

Paying for a good time – Spoonie Life

Like most 20 somethings I want to have adventures, memories I can look back on when life slows down a bit and say ‘that was a damn good time’. Unlike most of the people I know, they don’t have to barter with their health. If you’re a fellow Spoonie, you’re probably nodding in agreement.

Back in September, I was lucky enough to go to Disneyland with my Mum and sister. I mean, DISNEYLAND! We were taking a trip to Paris and I was ready for it, matching t-shirts and ears were essentials. From the moment we booked I also had a niggling feeling, a voice in the back fo my mind you’re going to pay for it later. And, boy did I. Even though we rented a wheelchair, got fast passes so, and had rest stops in the hotel (on more than one occasion I had to take emergency naps so that I could watch the fireworks or make it through dinner. I thought I’d handled the trip reasonably well it wasn’t until the last day I realised… I was in minus numbers, the spoons were scattered all over the floor.

 

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The thought that we have to ‘pay’ or reserve our spoons when we know we’re going to have to do something that will make us tired is hard. When I was first diagnosed, I rebelled against it – a lot. I got incredibly depressed and tried to prove to myself I could still do everything – I wasn’t ready to accept I needed to modify things. Now, I am better, I’ll try and plan a rest day here and there or not set my alarm and just let myself sleep. Little things that make life easier.

I joke that a big night out or day of big plans has me making deals with the devil, but really it’s made me appreciate them even more. As soon as I acknowledged that this was my life now, I started appreciating the things I do, because I have to choose them carefully. That doesn’t mean I can’t be spontaneous and have a trip on the beach – but I just have to rest a little more, maybe get a train rather than drive.

I refused to give up every fun part of my life to this illness – and I know I am truly lucky to do so.

Cold Weather essentials for spoonies

Cold Weather Essentials For Spoonies!

Brr, it’s chilly!

Very few people love the freezing cold, but when you’re a Spoonie (a name for someone who has a chronic illness) it can be a bit of a nightmare. For me, personally, the bold really makes my joints ache so it’s easy to feel a bit miserable and grumpy. So, it got me thinking, what are my essentials for the cold weather as a Spoonie?

A Good Coat 

Ok, I’m going to sound like your Mum. I was young and cool once and wanted to just wear a hoodie and no coat. Those days are OVER. Spending money on a warm coat is a good idea because staying warm is key (you’ll see a theme through this post). I’ve had coats from Superdry for the past few years and can highly recommend them.

Hat and Scarf 

I have a really cosy Gryffindor scarf that I absolutely love and top it off with a matching red hat (go, go Gryffindor). These can make all the difference for keeping yourself warm and you can get some really cute ones too! Also when I was leaving the house and it was -5 outside they were essential.

Gloves 

I lose gloves all the time. Every single year. Which is why I try not to buy ones that are really expensive. As nice as keeping your fingers toasty is, for me it’s much more important that the thicker material on my wrists keeps them nice and toasty as my wrists can get very sore when it gets to the minus numbers.

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Hot Water Bottle

I’ve been known to take a hot water bottle to work. I have absolutely no shame in that. They are an amazing invention. Cold at night? Hot Water Bottle. Achy joints? Hot Water Bottle. Period Cramps? Hot Water Bottle. They rule all! You can also get them really cheap on Amazon or in Primark etc. Mine was under £5 a few years ago.

Blankets 

I have a thing about blankets. Pro tip, Primark have amazingly snuggly blankets. I’ve got probably 7 or 8 blankets, most of them are Disney. I love them and you can find me every night snuggled up with a blanket.

Fluffy Socks 

Do I really need to explain these? Good for keeping your feet warm, they’re fun and you can slide across the floor.

Warm Drinks 

All the tea for me!

 

What do you think is essential for getting through the winter months? Let me know in the comments below!