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!

Fibromyalgia Awareness Day 2019

Today is Fibromyalgia Awareness Day! If you’ve been following my blog for a while you’ll know that I have and live with Fibro. I was in a horse riding accident which caused me to fracture one of my vertebrae and damage 3 others. The trauma of that accident lead me to developing the illness, which is chronic – I will now live with it for the rest of my life.

So, what are some of the symptoms of Fibromyalgia, the NHS describes them as:

“As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • extreme tiredness (fatigue)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating”

I tick off each and every one of those. It’s a super fun party lifestyle!

I thought I would write a post about how to live with the illness, about how I am thankful I am and the positives I have found. I will do a post like that, in fact, I’m pretty sure I have written posts like that. When I write those posts I’m in a good place and they are truthful, but there are times when, like today, I’m not grateful I’m just tired.

My life completely and utterly changed because of this illness, a ‘normal’ 9-5 meant I couldn’t do anything else other than work. I needed a job to pay the bills, which eventually lead me to freelancing (see, there’s one of those silver linings).

I had to plan rest days, think about how my plans would impact me for days or even weeks after, get a walking stick. The hardest part though? For me it has been the mental struggle adjusting myself to not being able to do absolutely everything for myself. I’ve an incredibly independent person and knowing that, sometimes, I need a little help has been tough.

I don’t think that when I was diagnosed I really processed or dealt with the illness I’d been diagnosed with. It’s something that I’m trying to work though now – I’m getting help with how I feel and the anxiety I have about the future.

While this might not be a super fun or happy read, it is truthful about how I feel at this current moment.

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?

5 ways to pace yourself over Christmas

5 Ways To Pace Yourself Over Christmas

CHRISTMAS IS COMING!

I absolutely love Christmas, it’s one of my favourite times of the year BUT it’s also incredibly busy. Because of that, I need to pace myself and I know that’s the case for a lot of other Spoonies too! So here are 5 ways I plan to pace myself.

If you can get things done in advance, go for it! 

I started Christmas shopping as early as I possibly could. Not for the bragging rights (although yes it is a nice feeling) because it took a lot of pressure and stress out of the run-up to Christmas.

It also meant I could spread the cost out which was another thing off of my mind. For me, long periods of intense stress can cause a flare so I’ll try and help myself as much as possible.

Plan in rest time. 

I know that I need to get a good sleep and not be on the go every minute of every day. I need to plan in rest breaks to make sure that I’m healthy and can get the best out of the day.

To do this, I try and have at least one day of the weekend to myself or make it more chilled. I try and make sure that I get to bed at a reasonable time too! Health is important and being sick over Christmas completely sucks.

Know that it’s ok to say no! 

Everyone wants to meet up, go to this, go to that. As much as I’d love to go and do everything the simple fact is that I can’t. Over Christmas, I miss out on pay because I’m Freelance! I need to not only look after my health but also my bank balance!

Let people help you.  

I’m not great at this. I fight to be as independent as possible but with such a busy time of year taking help when possible can really help. Someone else wants to drive? Let them! Someone else wants to do the cooking. Go ahead! If people want to help you they’re doing it out of kindness and, usually, love.

Try and stay in some kind of routine where you can! 

Christmas day is obviously exempt from this if you are like me and wake up stupidly early because you are so excited. I get a week and a bit where I’m not working. As much as I want to nap as much as possible every single afternoon I know it’s going to impact me later so I try and stick to some kind of routine.

I might get up a little later, stay up more or go out with friends – but I still have some idea of getting a good 8-9 hours every night then get dressed and get on with what I want or need to do.

 

Is there anything you’d add to this list? Let me know in the comments below!

Fibromyalgia and Me

In the first few months of this year, I was struggling with something that I didn’t want to speak about. A few years ago I broke my spine and in theory, it should have healed in 6 weeks and been a lot better within a few months. Then it didn’t… I had physiotherapy, acupuncture, had a routine by the rehab team, spinal injections the lot. It didn’t get better.

Test after test showed nothing, I was exhausted and in pain which was taking over my entire body. I was told that the spine wasn’t the cause but why did it hurt so much? I was absolutely miserable. Then I watched the Lady Gaga documentary Five Foot Two and it changed everything. It all clicked into place, I had Fibromyalgia.

The NHS website describes Fibromyalgia as:

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating

One of my best friends, Sarah, also has Fibromyalgia, she’d hinted it was something I should look into but I didn’t want to face it. I didn’t want a chronic illness (I know, logic wasn’t working here). Until one day I went to see the kindest doctor I knew and broke down. I told her every ache and pain, the tiredness, the stress. The fact I was hiding from everyone.

It’s not easy to get a diagnosis, there’s not a blood test or a scan. I was referred to a Rheumatologist which had a long wait. I took the day off work for the appointment and went with my Mum. I was an anxious mess, what if he didn’t believe me, but what if he did? It’s a hard set of emotions to explain.

I shouldn’t have worried, my doctor was incredible. We had a long chat and he checked the key points on the body which would lead to a Fibromyalgia diagnosis in combination with other factors.

The thing is, without Lady Gaga (and my friend Sarah) I probably would have had no idea what was going on with my body. More importantly, seeing people who are so successful (Gaga) and kind (Sarah) but still living with this condition gave me hope. Hope that I’d manage all this pain and anxiety, that I could still be a boss babe despite it all.

I’m hoping that in future I’ll be a lot more comfortable to talk about living with Fibromyalgia. It’s taken me a long time to process and feel comfortable about it myself. BUT I am still me, I still achieve what I want to and I still kick ass.

Thank you so much for reading!