When you live with chronic pain, you don’t just live with the persistent anguish; you live with the unknown, the looming judgement, the inevitable choice of enjoying yourself to the extreme and suffering vs staying put with no social life to ease the suffering just a smidgen, the false hope of moving forward when you have a good day only to be shattered with an intense bad day the next, the limitations, the loss of control, the disappointment in yourself, and the idea that you constantly have to prove a point, that this invisible torment shredding you of any normality does exist even though it can’t be seen hidden behind a giggle and a “yeah I’m good, how are you?”. Dealing with an incurable condition that isn’t understood from a distance can be isolating and it’s tough, very tough. I know from my personal experience I find it hard to trust anyone away from my tight knit, inner circle; like if I express myself too much the guessing will begin – the wrong kind, the presuming kind, the kind that sees straight through the exhaustion, the sickness, the misery and distress and focuses on the outer shell.
Truth is, nobody really has any idea until it’s happening to them and to see someone’s pain from a second hand view is never on par with actually confronting it on a daily basis. I know most people are just there to offer a reassuring hand but what they don’t realise is it can often come across as patronising and can backfire on an already over sensitive mind. Being a spoonie patient means I am superbly cautious, I’ll admit my moral compass is always aware of every particular conversation and I start believing the entire world is out to criticise, belittle and discriminate against me. There are some things, however, that do touch a nerve when you’re seeking help and comfort from somebody and as grateful as I always am for the support, I guess it’s important to know the rights and the wrongs? It’s a strange issue to deal with from both sides and in no way am I directing this post at anyone but it’s just a general reveal of my own emotions and how I feel.
1. “Get well soon”
As much as I’d love to be able to pop a pill and lay up on the sofa with a box of tissues and a duvet and be cured within a few hours, it just isn’t gonna happen. The reality is, I’m not going to ‘feel better’. There’s no solution, no simple remedy, it’s called chronic for a reason. I appreciate the kind wishes but it’s the etiquette of illness, it kinda just makes me feel like I’m disparaged. I’d much rather receive a “I’m thinking of you”, or “take it easy”.
2. “It’ll take your mind off it”
I don’t know why people think getting out of the house or focusing on a specific subject is going to ease my pain anymore. It won’t, that’s not how it works. My body doesn’t instantly react positively to a sign of fresh air and a change of environment. What you think you see is me getting on with my day and communicating in an ordinary manner because my pain is a part of me, it doesn’t matter where I am or what I’m doing it’s always there, it attacks everything from my thought process right down to my skin.
3. “Have you tried…”
I’m 100% sure chronic pain sufferers have gone to the end of the earth and back to try and discover a new fix. Along with medical professionals, the hope and the desperation, you’ll have undoubtedly trailed every page of the internet, had a battle with medications, treatments and research. So, regrettably, your casual reference to a cheap remedy you can buy in the supermarket isn’t gonna be helpful.
4. “But you look great”
Thank you, your compliments are much appreciated. I’m able to dress nice, put on some makeup and style my hair even with little energy and the struggle to manoeuvre without sweating out the pain. I can laugh, I can have fun and make light of a situation but that doesn’t mean I’m not hurting. Please don’t make me feel as if I’m exaggerating or ‘faking it’, or insinuating that just because I look alive, I am alive. I’m extremely thankful I don’t look like what I’ve been and continue to go through. Remember, what you see on the surface is nowhere near an accurate vision.
5. “You’re lucky you can just rest all day”
Yes, it’s absolutely brilliant, being cooped up unable to partake in any activity without wanting to break down and curse the world for this intolerable pain whilst the rest of my friends and family live their normal life without boundaries. Trust me, you wouldn’t want to be in that situation, be grateful you’re able to be on your feet all day without any extreme after effects.
6. “You’ve just got to be patient”
Patience and chronic pain are a joint duo, they arrive hand in hand. We’re nothing but patient as we wait for this hell to subside, only to realise it’s not going to happen. Patience is a virtue, and an important one at that but please don’t say this to someone who will be ill for the rest of their lives. I’m not saying diagnosis can’t change, it can, and to hold on to the belief is beneficial but it’s us living with the surrounding circumstances, it’s us trying to live within the confines of our illness, it’s us coming to terms with it.
7. “It could be worse”
Yeah it could be worse. I could be locked alone in a room somewhere with no food or drink, I could be dying or told I have only a week to live but right here in this moment, I’m feeling pretty shit. You can’t compare the problems of others or make someone feel like they shouldn’t be talking about theirs. You may be only trying to give a bit of insightful perspective but you’ll only undercut the emotional and physical impact and that’s the last thing we need.
8. “You were fine last week”
Don’t I know it. I made sure I took advantage of my better days and now I’m paying the price. That’s the thing about chronic pain, the potency is unpredictable and inconsistent. Some days I may be running around on the top of my game, the next I could be glued to my home comforts with my eyes remained closed because my pain is the worst it’s ever been.
9. “My auntie’s partner’s best friend used to get up at 7am every morning and run a business even when they were in pain”
You may as well just call me a failure there and then because damn if there was another way to make me feel useless and a burden on the rest of them, it’s to put me at the bottom of the ‘this person had control of their pain and you should too’ pile. Shock horror, not everybody deals with pain in the same ways. Just because someone with something wrong with them manages to get on with plans, does not mean another person magically has the same story or the same ability to cope. There’s different strengths and there are little to no similarities in the distinctive conditions of others. A pulled muscle in your back isn’t the same as pain stemming from the brain, for example. It’s just impossible to carry this outlook, especially when you’re a fit, healthy person with no knowledge on what it’s like.
10. “She can’t…”
I KNOW THIS. I know I can’t do what I used to be able to do. I don’t need a daily reminder or an introduction. It’s my number one pet peeve when someone introduces me in a negative way, when that’s the only attribute concentrated on, when I get recognised as someone who can no longer achieve or isn’t capable of anything. “Oh it’s a shame”, god yes, yes it is, but the strength I’ve built is empowering to me. Deep down I know they don’t mean no harm but I can’t help take it personal as only I understand how much effort it took to reach the next step.
11. “I’m sorry”
Finding the balance between pity and empathy is hard but please don’t feel the need to send your condolences at every opportunity, I’d much rather you make me laugh or sit and listen to me with thought. I don’t want you feeling sorry for me, I do enough of that myself.
12. “Oh yeah I’ve felt like that before”
You may think it’s reassuring letting us into the not-so-secret fact that ‘someone I know has something similar’, or ‘I’ve felt pain like that when I stood for too long’ but it’s incomparable and marginalising our experience. There’s a major difference between the average ailment and a long term ordeal of pain. You may think it puts us at ease but it’s just not the same, I know it makes me feel even more pushed out of boundaries.
13. “Don’t be so lazy”
Thanks for informing me that I’m always tired and can’t hold down a task for more than five minutes, I’m so grateful you seem to know more about me than I know myself. It might be hard for you to grasp the concept of a person being in the pain near enough every day with no resting hour but it exists and it’s happening as you try and bring me down a notch. If I haven’t moved for a solid amount of time it’s more than likely because I’ve run out of spoons, am finding it gruelling or have found a place of relief for at least a few seconds and I want to remain this way for as long as possible. Often enough, we have to work twice as hard!
14. “I think it’s mind over matter sometimes”
Allow me to let you in to a little secret, it most certainly isn’t ‘all in our heads’ and in my case, when the pain is stimulating from the brain itself then that’s far from truth. Of course thinking happy thoughts can work towards improving your mentality but it’s not going to make the pain vanish. It’s not just a bad thought or a pessimistic mood. We’re not imagining it or playing on the idea. Our pain is not driven from dwelling on the matter, it’s from a real physical aspect and most of the time we’re just striving to find a quality of life we can settle with.
15. “Maybe you should get up and do something”
Or maybe, just maybe, you should stop telling me what I can or can’t do and allow me to find my own pace. My life is a constant marathon race to aim towards a future of getting up and doing something so suggesting I get up on my feet with your demand is not going to aid me, it’s going to prevent me from locating stability. I know my limitations, I don’t particularly like being laid around but sometimes there’s no other option.
16. “You can be awful at times”
I’m a pain in the arse I admit that and when my pain is bad then my mood decreases with a sudden hit. I’m distant, I’m snappy, I can brush past your comments and be mistaken for being ignorant because every single inch of my zest is deflated and all I can think about is this nightmare ripping me apart. You have to be aware of this, I don’t mean to lash out or zone out, I don’t need to be told how horrible I can be, just don’t make me feel any worse, leave me to it and I’ll join in when I feel ready.
17. “You’ve spoilt it now”
Guilt is the biggest part of chronic pain, constantly feeling like I don’t belong or am ruining the party by cancelling plans and dropping out last minute because I just can’t bear to attend anywhere but my bed. If I so happen to back out of something, don’t leave me feeling vulnerable and at fault, if you look at the bigger picture you’ll find it’s the best decision and it’d be much more fun without slow old me anyway.
18. “You’re too young to feel like that”
Our youth should be the epitome of health, right? Where we’re free and glowing and have nothing to worry about. Unfortunately it’s the polar opposite for some, there isn’t an age limit to when you can get ill, nobody is “too young” to be struck down with anything. It’s yet another reason to make me feel like an outsider to the healthy folk, for me to meet society’s standards of achieving everything a young person should achieve with a condition I have no control over.
19. “Everybody gets tired”
That’s true, most people don’t get enough sleep and lag heavily whilst pining a good rest but my level of tired doesn’t just appear from staying up too late or chasing up paperwork all day. When you have chronic pain you have to accept the fact you will be tired no matter what you partake in. We have to question and face up to just how much vitality it’s going to take, we have to go through the stages of every action and set up recovery for afterwards. Taking a shower, walking the dog, washing the pots, brushing your hair, even sitting down stationary for hours; every single chore saps my strength and that in itself is tiring.
20. “Can’t you just…”
If I say I can’t, I mean I can’t. ‘There’s no such thing as can’t’ oh but there is when your body is giving up. I can’t forget about it, I can’t just get up and go, I can’t just shrug it off, I can’t relax, I can’t try and take your unwarranted advice on board because all I’m asking for is one thing: to be believed, and to be believed in.
I know most people mean well, but the last thing chronic pain sufferers need is advice on how to cope or suggestion of a miracle cure and a positive attitude. It’s not a choice, it’s a lifestyle we’ve had to adapt to and still continue to manage. The only thing I choose to do is minimise the complaining. Most of the above is the sole reason I stay quiet most of the time, even when I feel like I’m about to drop dead, I get up and I keep going. We can’t let people’s perception define how we feel about ourselves. Only we truly understand the strength it took to get out of bed in the morning and for that we should be proud of being able. Even if only for a moment.
Are you a chronic pain sufferer? Do you feel this way at times? I’d love to feel the guidance from my fellow spoonies!