Living with chronic pain comes with many challenges, from finding the right doctor to actually getting those around you to understand your illness. There are things that those without chronic pain won’t understand, but those with chronic pain will encounter on a daily basis, which is why I’ve decided to put together a list of things that those with chronic pain/chronic illnesses experience.
I’m aware I don’t ‘look’ ill
This is something I deal with frequently. My illness means that most of the time I don’t actually look unwell; yes there are days when you can see how tired and drawn I am, but some clever makeup application can make that disappear. This means that I, and many others with chronic pain, often have people assuming that there’s nothing wrong or that I’m faking.
Pain doesn’t discriminate by age
This one really gets to me. Just because I’m young DOES NOT mean I can’t experience constant aches and pains. Older people are constantly telling me “You’re young, and should be able to jump over my head!” as if I’m choosing to be the way I am, or simply lazy. The thing is my age has absolutely nothing to do with my physical health, and you shouldn’t presume my capabilities based on my age vs yours.
Sounds & light can be painful too
As well as having continuous pain, or pain brought on by touch, sounds and light can cause severe pain in those with chronic pain conditions. Sensitivity to stimuli of all varieties is a very common but little known symptom of chronic pain sufferers.
Clothes can be incredibly painful
Imagine the itch you get from a stray seam magnified by 20 and converted into pure burning pain, that’s what it can feel like if you attempt to wear uncomfortable clothing with chronic pain. Everyone who wears a bra can attest to the uncomfortable feel of an annoying strap or band, but some days it honestly feels like my bra is made out of barbed wire and the fires of hell. Not pleasant at all.
Having small habits that help distract from or ease pain
People who know me personally will confirm that I can often be seen rocking from side to side whilst standing, or rubbing my feet together when I’m sat on the sofa or in bed. Another habit I have is pulling/massaging my fingers and hands. Annoying as these habits may be to others, they actually help to ease or distract me from pain. These small ticks or habits can be found in many people with chronic pain.
Being in constant pain takes a toll on mental health
Understandably your mental health will suffer if you’re experiencing constant pain. In turn poor mental health can also worsen pain, or the way we feel pain.
Sleep? What sleep?
I’m sure that many chronic pain sufferers will agree with me when I say a good nights sleep is a thing of the past once pain enters your life. Stabbing pains jolting you just as you’re about to drift off, constant aches, not being able to get comfortable and restless legs/limbs all contribute to poor sleep in those with chronic pain.
Memory problems & brain fog are a huge issue
This symptom of chronic pain is one that I know very well. I often forget what I’m doing in the middle of doing it, or stumble over and confuse words while speaking. I lose chunks of time or feel like I’m in one of those spaced out film montages more frequently than I’d like to admit.
Say goodbye to a clean home
You wouldn’t believe it if you came to my home, but I love being tidy and organised. Mess confuses me and makes me itchy and uncomfortable. However since I was around 12 (when my pain started funnily enough) I’ve been incapable of keeping my space clean, and trust me it’s not through lack of trying. It’s just so incredibly exhausting to maintain a clean living space when all you want to do is lie down with a hot water bottle medicated to the high heavens.
Eating healthily isn’t always an option
When you can barely lift your head or even walk making a nutritious meal is the last thing on your mind. I’d like nothing more than to be able to cook every day; I love cooking, I was raised on good food and family recipes, but to tell the truth healthy home-cooked food is not a priority when all I want to do is rip my skin off to stop the pain I’m experiencing.
I don’t work out often because I can’t, not because I’m lazy
I quite enjoy working out, especially if it involves weights or flexibility training. However being continuously active and having a strict workout regime is not an option for me. Trying to explain to people that I’m not declining workout offers or assistance out of laziness but a genuine need to know my limits and not push myself can be frustrating and stressful, especially if you’d love to be able to accept their offer.
Working isn’t always possible
Work is a bit of a sore subject for me. I’m lucky enough to work in my mum’s café so I can have a lot of flexibility with when I work if I’m really suffering. But I can’t work as much as I want or even need to, which leads me to my next point…
I don’t know how I’ll feel in the morning
It is so hard to make concrete plans because I never know how I’m going to feel on any given day until I wake up, and even then it changes. This makes it difficult to plan for work, outings, holidays and so many other things.
Children might not be an option, so please don’t bug me about having them
I’ve always said I never want children, but it’s not because I don’t like children or can’t see myself as a mother. It’s because I’m terrified of actually trying to conceive and not being able to; or being able to have a child but not be able to look after it. I’m sure there are other people out there who feel the same way, and being nagged about when we’re going to have children or if we don’t want children really isn’t helpful.
Your ‘help’ isn’t always helpful
This one might make me seem pretty ungrateful, but I’m trying to be truthful with this post so don’t judge me too harshly. Okay so, I know people mean well when they tag me in the latest miracle cure, but honestly it’s really not helpful in the slightest. My illness is incurable; in fact they don’t even know what causes it, so all that happens is I read or pretend to read an article trying to sell me some wonder tea, ‘like’ your post and move on with my day in a slightly worse mood than before. Sorry guys.
My ‘fine’ & your fine are probably a lot different
This point can probably also be taken in the wrong way, but bear with me please. A lot of people say they’re fine when they’re not, but most of the time that’s in regards to their mental health/wellbeing. When someone with a chronic illness/pain says they are fine it can mean one of two things. 1) I’m in a lot of pain and could probably do with some more sleep, but for me this is a fairly average day or 2) I’m in so much pain I might be physically sick, but please stop asking how I am because it just makes it worse. So yeah, our versions of fine are probably pretty different.
Finding a good doctor is near impossible
Finding a doctor who not only believes you when you tell them your symptoms, but also has a basic understanding of your condition and is willing to help is almost impossible. I’ve left my doctors surgery in tears so many times because doctors have disbelieved me, fobbed me off or have basically told me to suck it up and get on with it (this actually happened recently).
Tablets only go so far
When you sprain your wrist, have a headache or toothache painkillers can be an absolute godsend. But if you live with chronic pain, it’s usually a miracle if painkillers even take the edge off. When you have to take painkillers daily, eventually you build up a tolerance and have to move on to something stronger. This continues to happen until you develop a serious addiction or get cut off by your doctor.
Is this normal or a new illness?
When most people have the flu or another illness it’s easily noticed and identified by its symptoms. But if you have a variety of consistent symptoms that you experience it can be difficult to tell if what you’re feeling is a part of your existing condition(s) or something entirely new.
If you have a chronic illness or suffer with chronic pain I hope you can relate to this post, and if you don’t then hopefully you learned something about what it’s like to deal with being constantly unwell and in pain.