My first waking thoughts always shift to what bodily pain I’m experiencing, and how I wish I was dead. Waking up with burning joints, a heart threatening to escape its confines and an inconsolable migraine is my usual breakfast, and intermittent nausea always joins the mix.
There are only so many times I can bare to hear someone say “Take some painkillers,” before I decide to scream in their face that a basic analgesic like paracetamol is a pharmaceutical placebo ploy and NSAID’s are either a hit or miss. Doctors refuse to give me anything stronger than tramadol, which doesn’t do much anyway, and other over-the-counter pills have been pointless upon trial.
I’m often policed on my chronic pain, and it’s probably because I appear to be able-bodied - an insensitive and useless assumption to make of someone. Constant invalidation of my pain only enrages me, on top of the frustration caused by my pain, and then I’m the one left to suffer with the brunt of it. The number of pointless GP appointments and tests have wracked up over the years, with my problems pushed aside and dismissed easily. It’s like I’m begging for help, clearly screaming and shouting for help, but the abyss fails to respond.
A few illnesses have severely incapacitated my life, and it takes so much of me to grit my teeth and get the bare minimum done. On top of a multitude of mental illnesses to deal with, I’m left exhausted. Just fucking exhausted. My day-to-day life is barren and boring, simply because I never have the energy, motivation or capacity to do anything. Most of my time is spent in bed or aimlessly shifting to the sofa, with the thought of movement crossing my mind but being cast aside quite easily. I don’t have it in me to will the pain away, and people simply refuse to understand.
You don’t have to be actively dying to be in constant pain. You don’t have to have a visible anomaly, out for the world to see, to be in constant pain. It’s that simple. I’m a university student, due to start my masters this month, and I’ve been home-bound since my undergraduate degree ended in April. I leave the house for therapy biweekly, and occasionally see a couple of friends every month or two, and if I’m up for it I’ll assist with grocery shopping every week or fortnight. To put it plainly, I don’t get out much, and that’s not just down to me isolating myself. I sure as hell don’t enjoy my time outside the house, but it’s not like I’m doing anything remarkable at home either. I’m limited by the barrage of pain that follows me around daily, and without an outward form for this to be expressed, people think I’m just being difficult. I’ve given up on the prospect of having any sort of career, because of my pain. I haven’t even started my classes yet, but I’m already panicking about what the hell I’ll be doing once my degree is over. I’ve never had a full-time job, and don’t see myself surviving that capitalist-era regime at all, yet that will be a necessity to attain at some point. For the sake of making some money and getting experience, I’ve worked zero-hour contracts for ambassadorial work and tutoring, as that suited my needs, but anything beyond that is questionable. Having the liberty to choose when I’d work was great, as the looming thoughts of “Ah shit. I have work tomorrow,” rarely came, and I’m terrified for when it’ll become a daily dilemma.
Even with zero-hour contracts, the comfort was limited. I worked pretty short shifts, as events ranged from one to six hours on average, but I had to insist on adjustments being in place as my health would take a turn at any time. Thankfully, my supervisors would happily accommodate me as much as possible, but my opportunities have been even more limited since then. The work was always simple, but aspects became hurdles. I can’t stand for long at all; I can’t handle smells, light or noise, as they trigger aggressive migraines; I can’t walk for long, as my heart rate is always high and my blood pressure dips spontaneously; I can’t carry much, besides something small, as my back can’t handle it; I can’t move easily, as bone and joint pain limits me - the list goes on. Everyday environments contain all of my pain triggers, and they’ll be unavoidable if I’m to work. Without a consistently useful remedy and understanding with my supervisors, it won’t be possible for me to work.
I have chronic joint pain, POTS, nausea, pain in my bones and regular migraines. There isn’t a day that goes by where I’m not feeling the effects of the above, and they typically exist simultaneously. It may not sound like much, but that very sort of judgement from others is what makes the situation harder. I can’t begin to explain the sheer fucking pain of migraines I experience on a regular basis, hitting fifteen a month on average. There aren’t enough words to express the constant chest pains that make me think I’m having a heart attack. There’s no sense in the joint pain that rips through my body every time I move. The smallest, most irrelevant details of life have become a struggle for me to endure, there are too many to name.
For someone to understand how my pain feels, you’d just have to live it. Nothing could prepare you for it. Despite having a pretty high pain tolerance in general, these conditions break me down to the weakest person. I’m left as a young person relying on shitty remedies that don’t do much, trying to live an able-bodied person’s life. It isn’t possible.
Having invisible illnesses sure as hell makes you invisible to medical professionals. Despite diagnoses lining up your patient history, they still throw a sullen sigh your way once you’re through the door to ask for help. The thing is, pain doesn’t discriminate. Invisible illnesses affect anyone and everyone, and take their toll on our lives, yet support is practically non-existent. I’ve had doctors come up with the shittest excuses for my pain, refusal for medication and outright denials of anything being wrong in the first place. Despite showing symptoms, I’m turned away. Despite conclusive test results, I’m ignored. Despite me crying, screaming and shouting about the pain cutting my nerves open, it falls on deaf ears. Given my mental illnesses, some professionals even insist it’s psychosomatic pain, even when conclusive test results say otherwise.
Navigating life with chronic pain feels impossible. Things in life aren’t designed for people like me, and getting around it to attain the same quality of life as an able-bodied person just isn’t possible. The notions cannot coexist.
I want people to understand that pain doesn’t have to be visible to seeing eyes in order to exist. I want empathy to develop between us, especially when I’m feeling broken by my symptoms. I want invisibly disabled people to be accommodated for, when things are unbearable. It really isn’t much to ask for someone to listen to us and validate our pain. It doesn’t take much to allow us to improve our quality of life, because we deserve it just like everybody else.
As a side-note, I can hear the marijuana advocates shouting aimlessly already. I understand that good marijuana provides incredible pain relief, I get that. I used to smoke regularly, but my usage had dwindled considerably for a number of reasons. The most pressing reasons would be that its pain relieving ability is inconsistent for me, and that it’s not always possible for me to smoke my pain away. I have to take its side effects into consideration, as they cause a world of their own issues, and mixing weed with my prescription medication is inadvisable anyway. That being said, it’s helped me out and made life somewhat bearable sometimes, but it just isn’t a cure. It hasn’t been an effective long term remedy, and having people push the idea onto me is petty and invalidating.
What works amazingly for you will not necessarily work for others. To have people shove mind-numbingly awful 'remedies' down your throat is a pain of its own, and shows a lack of empathy on their part. We have access to some helpful professionals and do our own research, so telling someone with chronic pain to just "try going on regular walks" and to dip into the world of CBD is frustrating. I know my own body and I know my own pain - I already have an extensive list of what doesn't work for me. Don't push it. Managing pain is more than pills and physical activity; I can assure you, we've already tried the typical suggestions multiple times.
Whilst some days are easier than others, it's long term pain nonetheless. Everything from hygiene to cooking, relationships to work and socialising to leisure is affected greatly. Living with invisible illnesses hurts more than it seems, as people may hide their pain for the sake of avoiding arrogant interjections in our lives. Even if I can stagger through a day at university with a migraine, I'm thinking about every way I could kill myself to be done with the pain of it on the inside. The silent battles never cease to exist.
Pain changes everything. As a young person, I see others my age achieving great things, and it's amazing to see that - but I can't help that stabbing sensation growing in my chest as I lament over the dull life I lead now. I have plenty of judgement towards myself for no longer having vibrant, energetic aspects to my life, and sometimes the smallest victories end up feeling entirely pathetic.
That's why support is everything. Meeting others with chronic pain is like a lifeline, because they truly understand what the hell you're going through. It's refreshing to not have to listlessly go through the same conversations every time, correcting arrogant assumptions from ignorant people. To be able to vent freely without the fear of facing stigma is so liberating, and a true light bulb moment of joy when an understanding is made. Having an outlet for chronic pain through conversation is incredibly helpful, and the few people I've been able to talk to freely about it have enabled me to better communicate my own thoughts and feelings on pain to others, including my therapists. It's changed how I process my feelings about my pain.
Lend a helpful ear to someone with chronic pain, and don't push for makeshift remedies when we want to vent. Good support changes a lot for us.
Zack