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!

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!

Book Review: The Sun and Her Flowers – Rupi Kaur

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‘never feel guilty for starting again’

In an incredible second collection, Rupi Kaur releases the raw emotion of a modern young woman. From the break down of a relationship to the relationship she shares with her mother, to finding love again when she wasn’t looking for it. Once again, my heart was flung into my mouth reading this and with good reason.

Sometimes a book falls into your hands when you’re in desparate need of it, for me, this was The Sun and Her Flowers. I’ve been a Rupi Kaur fan since reading her first collection Milk and Honey, which spoke to me as a young woman. So, of course I picked up her second collection and devoured it in 24 hours.

When reading Kaur you need to know she is brutally honest. She’s honest about her body, her mind, her sense of self and being a woman. She reflects on the good and bad around her without holding back, because you know that she has held back for so long. There is anger, there is pain and reflection on suffering that has been endured but the poems that describe them are crafted so beautifully that you feel every emotion without sinking into darkenss yourself.

While I’ve already touched upon it the most magnificent part, for me, was the poems Kaur wrote about her mother. She talks about the sacrifices and struggles her mother had to overcome so that Kaur and her siblings could achieve. She wonders what her mothers life would have been like should she have been free to make her descisions. It’s a wonderful insight into the relationship she shares with her mother.

Of course it wouldn’t be a Kaur collection without the accompanying illustrations. There isn’t a fear of showing womens bodies as they are in captivating illustrations. These seem to bring the poems to life at certain points and allow you to visualise the poems themselves.

I gave this collection five stars. This is an absolutely breathtaking collection and something I’m sure I’m going to read again and again. I, personally, found it to be an incredibly empowering collection. I’m sure that Kaur will go far, and I can’t wait to see what she does next.

 

Living with Chronic Pain

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For the past year and a half I’ve been living with moderate to severe back pain. By definition this now means that I’m living with chronic pain, there’s no break from it, no rest , it’s just a constant part of my life. Living with chronic pain is not something that anyone chooses, in my case, it was because of an injury. We’re still not sure about the damage, I’m booked in to see another specialist and have another MRI scheduled.

I’ll say it once and I’ll say it again, it’s all about good days and bad days, as many illnesses are. On a good day, I might be able to do a light workout, walk around and the pain is just background noise. On a bad day, it’s like someone is hammering on my spine, the smallest things will hurt and climbing stairs can feel like Everest and when it’s at its worst I can’t feel much in one leg. I might have to take a crutch when I go to an event. I take my medication but it doesn’t even skim the surface, to say that it’s frustrating is an understatement.

But what’s it like to live with chronic pain? Well, it’s definitely not fun, but I’m always aware that my injury could have been much worse. I’m walking, when I was incredibly close to losing that all together. So I’m always aware of that but living with chronic pain means a lot of doctors appointments, a lot of tiring discussion, repeating yourself, physio and medication change after medication change. It’s not pretty, but for a lot of us, it’s just life.

Some people might not understand why I’m broadcasting this, why I’m letting myself possibly look weak. I don’t think that’s it though. I don’t think anyone who keeps fighting is weak and that’s what people with chronic pain do. We go to work, we live our lives the best we can, we just get on with it and that’s the simple truth of living with a chronic illness. Even when the pain is the worst it can be we carry on as best we can. That is what living with chronic pains is like.

Thoughts at 2am…

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I thought that by now, with less pressure and less stress in my life I would be happily curled up and asleep at 2am, but apparently it’s a good time to write. It’s quiet here and just leaves me alone with my thoughts. It’s nights like this were I’ve tried everything your supposed to do that I just turn to writing instead, which some people will nag ‘the light of your computer will wake you up more!’ but honestly nothing’s getting me to sleep right now. I don’t like mentioning or talking about the pain in my spine still bothering me but lately it hasn’t been at it’s best. I’ve been sat in a very rigid chair for about 10 hours a day for the past few weeks, for anyone’s spine that would cause problems, for mine it’s hell. So while I’m trying to wait for the second lot of painkillers to kick in I thought, why not let my mind wander, see where I end up.

I’ve been trying to fall asleep for a few hours so a lot has been going through my head, just thoughts zipping past like cars on a motorway. One keeps coming back to me though, I suppose it’s because of an essay I was writing today, I can’t seem to escape the bloody things even when they’re done! I was thinking that pain, in all it’s forms is something that makes us human. When a person is in so much pain, mentally or physically, they will let go of what they thought they knew, sometimes of their opinions and prejudices, all that matters is stopping that pain, unless you are incredibly stupid that is. Great pain is a humbling experience. It doesn’t matter who you are, where you come from or anything like that pain and fear make us all the same, because it is.

I’m a true believer that once someone has experienced true pain in their lives it will change them for good. For some people it will make them bitter, angry, resentful. For others pain makes them appreciate more, try and be more compassionate and understanding as a person. For a long time after my spine broke I would be angry, I’d be filled with tears and hatred that my body had let me down. Thousands of people fell off horses all day, why did it happen to me! Why did the doctors risk it! Why did my notes keep getting lost! I was miserable and honestly the anger was just making me more tired, more sad. I’m not saying people aren’t allowed that time, of course they are. In the words of John Green ‘pain demands to be felt’, I know I needed that time because I was so upset and heartbroken and unsure of the future. If you were told that there was a chance you might just lose the ability to walk by trying to walk (and do the one thing that would make you better in the long run), wouldn’t you be?

I held on to the pain and frustration for a long time, I was convinced that I was just a burden and there was no point to anything when it took me so long to take a few steps, when going out somewhere meant having to take my wheelchair or that I had to sit while everyone else could stand. I wish I could tell you there was a wonderful eureka moment where I let go of it all, where I just went ‘ok, enough is enough let’s get on.’ I was always carrying on but after time and after I learnt what my body needed and how to start managing the pain I felt a little calmer, a little more able to deal with the world.

I would never wish my injury on anyone, the fact that it’s causing me to be awake at 2am the day before my final deadline because of physical pain is not a fun thing BUT I do believe that it’s made me into a better person. The injury taught me more than I would have believed it could. I quickly learnt that life was what you made of it when you got given something shitty. I learnt that as much as I wanted to organise everything for the next 30 years I couldn’t. I learnt that life is a mess a terrifying, wonderful and always evolving mess and you just fit in where you can. I realised I was allowed to take a break and not be this built up image of ‘perfect’ I’d associated with myself. Am I annoyed that I might not get the first I worked for because of the early days of fuzzy pain? Of course I am. Am I going to let it taint my whole university experience, final year and the progress I have made? No. Likewise I learnt what I need in friends and that I can be alone comfortably more than I give myself credit for. I learnt that I can handle a lot more than I can give myself credit for and that while my body might not look like a magazine cover, it’s mine and it’s actually a pretty amazing thing. Being in horrific pain lead me to most of this, which is something so strange to me. Either way, the past is the past and my future is my future so I’m going to see what I can do with these experiences and be the best person I can be.