Chronic pain changes your life completely. But what's worse is that friends and family struggle to see why as the effects are invisible. This post is for anyone that has a loved one that suffers from chronic pain.
Although it's may be hard to sympathise, it doesn't mean you can't be supportive in your own way. Here’s 30 things you need to know about chronic pain sufferers.
When you want to help us, thoughtfulness goes a long way
We want you to ask us about our condition (1)
This may sound counterintuitive, but it’s true.
When you ask us questions about our condition it shows us that you want to understand us better in our time of need.
But, for the love of all that is good, think before you ask.
I am mind blown by the number of people who ask me questions like, “So, how long do you have to live?” Or, “Will you ever be normal again?”
No. I am not joking.
And yes. These are really bad questions to ask ANYONE.
Just getting a message from you is awesome (2)
If you’re ever wondering how we’re doing, pop us a message.
If you find an awesome joke online, send it.
If you’ve tried something you really think we ought to try as well (NOT medical), then tell us. We love hearing from you and it always makes our day brighter.
And I can promise you this...
When we’ve got some energy, we will return the favour.
Don't give us suggestions or medical advice (3)
We appreciate that you’re trying to help us, so thank you for sharing your advice. But trust me when I say:
We’ve probably heard about it.
And if it was relevant, then we’ve tried it too.
When you’re unwell for so long – you exhaust your medical options. It’s tough having chronic pain. Especially because it cannot be cured – only managed.
Chronic pain sufferers want you to know that speaking about ‘cures’ isn’t helpful to us. Talking about hypothetical silver bullets just isn't helpful or motivating.
We don’t appreciate it when you tell us to “push or fight harder” (4)
… Or (my personal favourite) ‘stay positive’. Like, really? We know we have to keep positive, but it's not as easy as it seems.
Every day, we push. When we wake up, we push. When we get out of bed, we push. When we shower, we push.
Just breathing… means we’re pushing.
We would not be here if we weren’t pushing. We’re fighting for our lives. So, “keeping positive” is essential. But it gets harder than you could ever imagine.
So please cut us some slack if we’re upset sometimes – we’re allowed to feel frustrated.
Sometimes all we need is your love and support (5)
The words, “I’m here for you”, go very far.
We know you want to help us, but just being there is all we need. We often feel lonely. We spend our lives seeing doctors and trying treatments, and we do it on our own.
Sometimes we want to share our concerns it with you. We don't expect you to understand or fix anything. All we need is some support as we try to tackle each day – maybe a hug too.
When you want to say something positive, please think before you speak…
When you say, “But you don’t look sick”, it’s irritating (6)
We know we don’t look sick. That’s the damn problem in the first place.
The fact that we don’t look sick means it takes us longer to be diagnosed. Once we have a diagnosis, it takes 10 times more effort to get anyone to believe us.
And of course, regardless of what we say, we’re judged by others far more than believed or understood.
And we know you have the best of intentions as our friends and family, so if you want to throw a supportive complement our way, all we need to hear sometimes is:
“We know how much effort it takes to get dressed up and it’s paid off. You look great!”
We don’t know how to answer you when you ask us if we’re feeling better yet (7)
Chronic means the pain doesn’t stop. So, ‘feeling better’ is extremely relative to the situation.
If we have the flu, then, of course, we will feel better after some time. But, if you’re referring to the chronic pain… Well, it’s chronic.
However, we will have better days and worse days. So a better question would be:
“Is today a better pain day for you?”
We don’t want sympathy or pity (8)
There will always be people who like to victimise themselves. But they are not the majority.
Most of us don’t want to be pitied or to be treated differently because of our illness. We are trying to lead the best lives we can, given our obstacles.
We are trying to create our new version of ‘normal’. And there’s no space for normalcy if we are continuously pitied because of our health issues.
Hugs are magical – often better than words (9)
Okay, I’m mentioning hugs again – but you just can’t have enough hugs. I strongly believe that.
Depending on the kind of chronic pain we have, the hugs may need to be super gentle. But they’re still appreciated.
Everybody experiences chronic pain differently (10)
When you say something like, “Someone I know had chronic pain, but they just did a lot of yoga and now they’re completely fine.”
It makes us feel like crap because it’s not like breaking your leg. There are many treatments you can try, and none are guaranteed to work.
We don’t want to disappoint you, but it’s the truth.
Each one of us needs to find a delicate balance of medication, treatments and lifestyle choices to manage our chronic pain.
When you want to buy us something, keep it simple…
We try hard to look good (11)
When you say, ‘You’re looking great!’ Just remember there are about 3 layers of concealer under our eyes and any other makeup that covers our pale complexions.
We want to feel good about ourselves when we have the energy for it.
So small skincare, makeup or hair gifts do help lift our spirits and give us a good confidence boost.
We appreciate anything from a pharmacy – because sh*t gets expensive (12)
I know this sounds weird – but bear with me.
You have no idea how much money we spend at the pharmacy every month. Besides our actual medication, we also need to buy:
Vitamins, supplements, medication storage, disinfectants, every single topical ointment you can imagine, bandages, plasters, syringes etc.
I give a pretty good breakdown of all the medical stuff someone with chronic pain must remember to travel with in my chronic illness packing list article.
So if you want some ideas of what you could gift, I would check it out.
We’re always looking for stuff that makes our lives easier (13)
Let me paint you a picture:
You’re walking with a crutch down the road. You’re holding your dog’s leash in the other hand and have your phone in your bag. At that moment... your phone rings.
Just remember, now, you have no hands available.
You have to stop in the middle of the road. Tell your dog to sit. Put your crutch down. Fling your bag around. Rummage through your stuff and try to find your phone.
When you have chronic pain – daily tasks become a bitch. Next time you struggle to complete a task, think about something that could help you make life easier.
It’ll come in handy the next time someone you love wants to help you.
Buying the healthy foods we need can get expensive (14)
Many of us follow a relatively healthy lifestyle so that we can maintain a better quality of life. And this includes eating properly.
There are some awesome healthier alternatives to our all-time favourite snacks. And the best part is that they taste good.
Most supermarkets have a health-food isle now, so it should be super easy to find these snacks too. (And relatively affordable.)
A little pampering goes a long way with us (15)
I don’t see many people giving beauty salon/spa vouchers as gifts… and I don’t know why because they’re awesome. Especially if you have a chronic illness.
And the best part is you don’t have to be that generous in a gift card like this, because it’s just a contribution towards whatever treatment we choose to do.
When you’re frustrated with us, just remember …
We don’t mean to be forgetful (16)
Our brains are in proper survival mode. This means less important aspects of survival, like memory, get a little faulty.
As someone with chronic pain, I highly recommend all of you keep a daily to-do list and a diary.
I realised this when I either started arriving 2 hours late for events or about a week in advance.
We need to sleep a lot. Especially when our bodies let us (17)
Sleep is so weird when you have chronic pain. Our melatonin levels are completely shot. And, neuropathy, for example, can make the pain worse at night.
The bottom line is:
It’s hard to tell our body’s to sleep when we need the rest. So when the opportunity arises – day or night – we take it.
We’re trying to lead a normal life as best we can (18)
Chronic pain sufferers want you to know that we’re doing the best we can to keep a certain amount of ‘normalcy’ in our lives.
When you see us, we’re perpetually torn between:
- Telling you if we’re in pain because we don’t want to sound like we’re complaining.
- Keeping quiet, because we don’t want to let you down out of the blue if we have to leave.
We’re not faking it – some days we’re well, other days we’re not (19)
We don’t get to choose when we have a chronic pain flare.
Sure, some things can make the pain worse than others.
But all in all, we genuinely can be perfectly fine in the morning and feel like we’ve been run over by a bull a few hours later.
We don’t want to cancel plans or leave early (20)
This is another thing I hate.
Letting anyone down is horrible – nevermind your family and friends.
Just know that when we cancel, we’ve exhausted every other option or possibility before we send that guilt-ridden text.
When we tell you that we’re sore… it’s serious
We’re not lazy (21)
It’s genuinely that draining to be in pain 24/7.
And depending on our pain levels, our energy levels always fluctuate.
So if we stay in one position for a long time, you can be sure we’re pretty damn sore.
It’s genuinely not in our heads (22)
We’ve all gotten so used to associating pain with an injury. That it throws everyone off when there’s no direct cause for the pain in the first place.
The pain we experience is 100% real. Even if it doesn’t look like it, I promise it's there.
Unfortunately, pain doesn’t need a direct injury to be real. When it’s serious, you’ll be able to notice small things. My face usually turns 3 shades lighter, my pupils dilate and my hands begin to tremor.
It takes energy just to get out of bed (23)
Everyone’s situation is relative. But for me, staying in bed is something I have had to do so much, that it’s just not a place I want to be unless I have to.
Not willing to get out of bed is a pretty clear indication that you’re just not well.
We can’t just take medicine to make it go away (24)
Our medication helps us manage our pain. But it does not take it away.
That goes for pretty much any treatment available for chronic pain.
So, when we’re very sore we may not get over it that easily. Patience is key when you’re waiting out a flare.
If we look bummed and grumpy – it’s because bad pain days suck (25)
It’s rather crappy when you have a bad pain day. It’s even crappier when it’s a string of bad days all tied together.
And when haven’t slept properly, it’s even easier to get grouchy and a tad emotional. We’re sorry if we snap at you. We’re sorry if we become unpleasant to be around.
We are doing our utmost best. And we always appreciate you being close in our times of need.
We’re not hypochondriacs (26)
My mom has started comparing me to a glass vase (because I break so easily).
She came up with it after she walked passed me one day, and bumped my arm gently.
I went white in the face and was almost in tears. And she couldn’t believe I could be in that much pain.
She looked at my arm next – it had doubled in size and gone from pink to purple in about 5 seconds.
So, no. We’re not hypochondriacs. Things actually can get that bad, that quickly.
If we cancel on you. If we RSVP no. Or if we don’t answer your calls, we are so, so sorry. We want to be as present as possible.
And when we can. We will.
When you don’t hear from us…
We don't know how to handle every situation (27)
I’ve had chronic pain for 11 years, and I am still learning new things all the time.
It would be naive and arrogant for anyone with chronic pain to presume that we know it all.
Each time we get thrown in the deep end with work or studies etc. our health takes a toll. We become exhausted. And the first thing we have to sacrifice…
Is our personal life. We need to spend as much time as possible recouperating.
Socialising drains our energy… that we don’t always have (28)
Most people can hang out with their friends and replenish their energy after a hard day.
We just can’t do that.
If the day has been hard. Speaking, listening or doing anything at all just makes us more tired.
In this case, when we turn down your invitation to hang out,
It’s not you. It’s us.
We don’t want you to stop including us from your invites (29)
This is a rough one to admit, but it’s so true.
I know we turn down more invites than we accept. I know it shouldn’t matter, but it does.
Exhaustion and pain make it difficult to participate in society as it is.
So the more we are excluded, the more we feel left behind. Next time you’re planning an event, remember to keep us in mind.
We’re keen to hear your plans. Even if may not be able to join.
Even if we’re not around, we want you to know how much we appreciate you (30)
Life is not easy to juggle as is. Let alone when you have debilitating pain that exhausts you.
If we could do more, we would. And we think about it all the time.
We know it’s not easy to have someone in your life with chronic pain. We’re unreliable, rather unsociable and less present in your lives than others.
So, the one thing I guarantee is that every single gesture of support you give us is always appreciated deeply.
If you are a loved one of someone who has an invisible illness or know anyone that may please help us a share this piece of content and inform more people.
If you are a spoonie yourself please let us know the things you wish people knew that I may have left out.