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!

Using A Walking Stick In Your Twenties

What It’s Like Using A Walking Stick In Your 20s

This year I want to talk more about living with a chronic health condition. I’ve decided I’m done with it being a secret – this is me! Something that I found difficult at first was using a walking stick in public – and I don’t think I’m the only one!

As with many invisible illnesses people can misinterpreted why you need that seat on the bus/tube/train. Even with a ‘please offer me a seat badge’ I always felt that people were questioning me with their stares. I look young and healthy, ‘too young to have those problems’ as people have told me.

When using a walking stick, in theory, this should make people a little more understanding, although in my experience people are still questioning as to why someone young is using a walking stick.

Walking Stick in Disneyland

Way back when I initially broke my back, walking was a struggle and while I was recovering I still found a numbness in my legs that came and went. When I had to go out for the day I used a crutch to try and balance myself, hoping that with time and exercises the feeling would come back properly.

After a period of time I was diagnosed with Fibromyalgia and a big part of living with it is finding ways to make you illness more bearable and control the illness rather than the other way around. One of my friends used a foldable walking stick, so I hesitantly ordered one.

I’ll admit when I first got it I hid it away. I was embarrassed – there weren’t many nice designs and it felt so old. That was until I knew I was headed into London – I’d need the support, so I took it with me folded in my bag ‘just in case’. And, you guessed it I ended up using it.

Wheelchair in Disneyland

I’d love to say after that I didn’t feel self-conscious, I still do sometimes! Going to Disneyland in September was the most I’d used it in one go, as well as a wheelchair. I was suddenly self-conscious, I didn’t want people to think I couldn’t do stuff for myself or feel sorry for me – and I think that was my biggest fear. That this would take my independence.

It did nothing of the sort, in fact it made me feel prepared. Because I have one that folds down it means that I can see how I feel and if I do need to use it, I can. The biggest block for me was mental. It worried what people thought and now I’m happy enough to tell them why I use it and if they don’t like it that’s their problem.

Using a walking stick in my twenties wasn’t exactly how I thought things would go but I really have 2 choices. I struggle to walk and am in a lot of pain on days I would like to enjoy myself, or I use the damn stick. Which would you choose?

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.

Does Positivity Work With Pain Management

Does Positivity Work in Pain Management?

Hello, my lovely readers!

Today I want to talk about managing pain. It will come as no surprise to my regular readers I think about this more than most people after an accident a few years ago. I live with chronic pain and most people don’t know when they meet me it can be pretty surprising because I’m very positive as a person. And that’s central to today’s post, does positivity work?

I’ve met with a lot of doctors and multiple times I’ve been told ‘your positive attitude will pull you through pain’. A few years ago I would have scoffed and I definitely think this doesn’t apply to every situation. When I first broke my back positivity wasn’t happening, I was in agony and when I wasn’t I was asleep. Then it came to recovery and my attitude did play a big part.

In Recovery 

This was probably the hardest time to be positive. There were a lot of things up in the air at this time, I was obviously in a lot of pain and having to navigate what was going on. That said trying to keep some positivity was important, particularly in physiotherapy because that shit can get tough! I kept focused on getting better and other positive things and it definitely helped.

In Diagnosis 

Diagnosis was weird, I was happy to have an answer, horrified about what it meant for me and wanting to look at what I could do next. It was a mix of emotions. No matter what I had this determination not to give up, I had to still live my life. I got told time and time again the determination and all the positivity I could muster would get me where I wanted to be.

In Life

Ah life, it does like to give you a kick when you don’t need it. Life is hard, people try and say it’s not but let’s be real. So, staying positive in life when your body hurts all over? I take it one day at a time. That’s honestly it. The only future things I try to focus on are things I’m looking forward to, I try and write down one thing a month and when I’m in a lot of pain have the mentality that this will pass and once it does I’m a bit closer to the thing I’m looking forward to.

 

So, yes I do think positivity plays a huge part BUT having time to be upset, to struggle and to be furious is a big part of recovery. Do I have days where I’m pissed off or I cry because things changed? Of course, I do. Sometimes I have weeks where I feel this way. THIS IS NORMAL! That said, I do feel that, if and when you can be trying to be positive is important.

How do you stay positive? Let me know in the comments below!

3 Years Later.

I don’t know why every year I’m surprised at how long it has been since my accident. That day changed my life completely and I didn’t even know it at the time. Long story short for those of you who are new here, when I was at uni I had a horse riding accident. It was what seemed like a simple fall which lead to me think I was fine, despite an ambulance trip. After 2 weeks,  a doctors visit, another visit and then an emergency hospital visit I was told I had damaged four vertebrae in my spine. And, so it began.

I’m not going to write a whole post on the past 3 years and everything that happened since, instead, I want to focus on now. As I write this I’m in a job I’ve been wanting to be in since I was at university, I have a flat, friends and a wonderful partner. That’s all well and good but it is still a struggle. I have been in pain since the accident and I will continue to be in some form for the rest of my life because of the damage that was done.

There are days when I’m depressed, where I think why did his happen to me? When I want to pack everything in and lay in bed. I don’t I carry on, I lean on the wonderful people around me when I need to. I take pride in my job, my blog and the things I have and continue to achieve. Of course, I do get upset that I can’t easily go and do things that others my age can. Going out and being on my feet all night? Nope, not happening. Taking part in a sport or intense exercise? Not a pretty ending. I miss riding, I miss standing at the front of gigs but I try not to focus too much.

Mostly, I’m using what happened as something to remind me how far I’ve come and how much more I can, and will do. I’m working on a new idea, which relates to what happened (and that’s all I’m saying for now). I’m trying to forgive myself when I do struggle and need to ask for help. I’m getting through, each day as it comes, I’m accepting the fact that I have to do things a little differently.

I’m fully aware that this post is probably a brain dump, it’s also not my most eloquent post but that’s what it’s like. I don’t want sympathy, it is what it is and I’m here, I can still walk and I’m still going. That’s all that matters.

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5 Things You Should Know About Living With Chronic Pain

Recently I asked on Twitter if people would be interested in some posts about living with pain. I get asked all the time how it feels, what I do, how I still do so much so here are a few posts about it starting with things you should know.

Chronic pain (although apparently it’s now being relabeled as persistent pain) is classed as being in pain for more than 3 months. It can happen for a variety of reasons and impacts everyone differently. For me, mine was triggered by a horse riding accident when I was 20, in which, I broke part of my spine and damaged the surrounding area. I’ve been living and dealing with this for three years and there are some things I’d love people to know.

We can still do a lot, so ask us! 

Things change and it’s hard to know how what and how your friend or family member can do but you should still ask! Even if we can’t go, being asked is still important. There might even be a way around it!

It’s a case of good and day days 

As with most things, there are good pain days and bad pain days. It’s all about taking it one day at a time and seeing how things pan out. Sometimes we might be a bit quieter or sharper, it might not happen very often but it’s worthwhile keeping this in mind.

We’re still the people we were! 

Chronic pain might change a few things but not the person themselves. They’re still the person you know and love. Their humour wasn’t taken away, nor was their personality! No one wants to be treated differently for something they can’t control.

Being in pain is exhausting so don’t feel like your friends don’t want to see you. 

Honestly, on a bad pain day, it can completely wear you out. I work full time so if I am aching the last thing I want to do is have to go out after work. All I really need is a bath, some comfy PJs and an early night, it’s nothing personal!

There’s a lot of guilt and loss 

For some chronic pain is permanent there can be feelings of loss, for the things you may have had to give up (for me it was riding) and guilt for the things you might not be able to do or things you might not be able to go to! I can’t go out dancing all night like I used to, for example, not a life or death situation but it sucks all the same.

 

Is there anything you wish people knew about chronic pain or do you have any questions? Let me know in the comments below!

Spine Update! November 2016

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Depending on how long you’ve been reading my blog/following me on Twitter you may or may not know that back in 2015 I fell off a horse and broke part of my spine (vertebrae T12 to be exact) and damaged other parts of it. It’s been a long 18 months with a lot of pain, scans, x-rays, physiotherapy, wheelchairs, crutches and walking very, very slowly. There wasn’t any part of my life that wasn’t impacted by the accident, I spent a lot of time (longer than I should have been) on maximum strength painkillers and spent almost 2 months in this wonderful contraption…

 

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I documented on here and on Twitter whenever I could what it was like living with my spinal injury. I learnt a lot from it and it gave me a bigger appreciation for not only being able to walk but life in general. That said, it is frustrating and the pain was indescribable and is still a huge part of my life today. BUT! I finally have some good news to share.

Last week I attended a clinic called Hampshire Backs to see a back specialist. I’d waited since September for this appointment and had an MRI (I was stuck in the machine for an hour!) determined that something would happen this time after seeing endless doctors, consultants and surgeons only for them to shrug their shoulders. My new consultant is brilliant, I’ve seen the scans and my break is fully healed, as is the damage to other parts of my spine, my nerves are clear of disruption and my spinal chord is good. All the majors were ok! We then went to on a physical examination, one that’s almost routine to me now, it took him a small amount of time to work out what was going on.

Due to the fact I’ve tried almost all the options that I have been able to at this point, including a year of physiotherapy, we were going to the next step. At some point next year I’m going into hospital to have a procedure, during which I’ll be asleep while a mix of steroids and anaesthetic will be placed in to the joints in the base of my spine. The hope is that this will give me relief, meaning I can build up muscle before it wears off and hopefully that will help the pain. IF this works then there will be talk of further procedures, if not…well we’ll cross that bridge when we come to it.

I won’t lie to you, I’m terrified of going to sleep and having people stick things into my spine but I also have a new found hope. This could be the start of me not living in constant pain and worry. I’m going forward and trying to be positive about this.