Why Having Chronic Pain is a Full-time Job

Having chronic pain is something I wouldn’t wish on anyone. Its something that changes peoples lives, it destroys dreams and hopes, it can be the living version of hell, it prevents so many beautiful things, its hard, its so god damn hard.

Have you ever had to tell someone you work a part-time job, work one day a week or don’t work at all? and then be asked why, why don’t you work full-time? why don’t you work at all? Then they may have an odd look on their face, because you don’t really want to explain. Maybe that’s because you have an invisible illness, so they might not believe you, or maybe its because you don’t want to share that information with a stranger, or maybe its because you simply don’t want to explain. It can be hard when this question is brought up in conversation, especially when you’re meeting new people.

I use to think working casually or part-time wasn’t good enough, that I would never make enough money, that people might think I’m lazy, that its strange or weird, that its not up to my standards, and that I’m not good enough. But all these views are simply not true, it took me along time to realise this, and to change my mindset. Because living with chronic pain is a full-time job, unfortunately we just don’t get paid for it. Because my chronic pain is invisible it was also hard for me to come to terms with it. Over the years of living with pain I have come across people who don’t take me seriously, or simply don’t believe me, because I sometimes do things most people without pain do. Apparently when you can’t physically see pain, it doesn’t count. But chronic pain shouldn’t be treated lightly, it can cause so many other problems in someone’s life. Chronic pain can lead to other health issues, both physical and mentally.

Why is chronic pain a full-time job? Its because people living with chronic pain have to do so much work and preparation to manage their symptoms. Along with research, advocating, going to appointments, time management and organisation. Its not just about resting, its ALOT, they work ALOT to be able to manage their symptoms so they don’t burn themselves out. Sure resting is a must, and a need when you live with chronic pain, but so is researching, going to appointments and advocating.

Going to appointments is pretty self explanatory, making sure the pain isn’t anything life threatening, managing medications, and addressing new symptoms is important. When I talk about research, I also talk about advocacy, people with chronic pain need to advocate for themselves in order to get appropriate care. Because not everyone has access to health care professionals that cost a fortune, not all of them care, not all of them look at the big picture, and not all health care professionals are judgement and condescending free (trust me, I know from experience). People with chronic pain are literally advocating for their life and to be taken seriously, especially when the pain is invisible. How else are individuals going to learn about their illness if they don’t research, and when I talk about research, I don’t mean a quick google search. Researching takes time, its difficult and consuming because its a constant battle to research different treatments, and figuring out whether or not a treatment is worth it. And don’t forget about researching the doctor or specialist they want to see, because there’s no point going to someone who has multiple bad reviews. The research is also ongoing, because new research, ideas and treatments present all the time, new aspects related to chronic pain arise in someone’s life constantly, which requires ongoing research.

Organisation and time management, why does that fall under a full-time job of chronic pain? Because people who deal with pain on a daily basis need to organise their day/ week/ month, so they don’t over do it to the point of worsening their pain. Time management falls under organisation, time management is important because individuals need a certain amount of time to recover from a task, and a different amount of time is needed according to each task. For example, someone wants to go for a 20 minute walk, they may then need an hour rest after, or if someone wants to clean the kitchen, they may need a 15 minute break after. Remember that each individual requires different times, and different capacities. No one person is the same.

Chronic pain is mostly always there, when you’re at home, when you’re at work. when you’re out with friends or family, when you’re dating, it doesn’t usually go away. Sometimes the pain is pretty good, sometimes its not, it can be very unpredictable. Complications and decisions always arise with chronic pain, because there is also a fear of the unknown. The fear about about when will the pain become a 10, will there be new symptoms, what if the pain gets 100x worse when their a thousand miles away. They have to prepare for these things, have a safety plan, have resources, research any new place they are going to, or avoid certain places and triggers.

Triggers are another thing, another horrible thing that comes with chronic pain. Everyone has a trigger, but everyone’s trigger/s are different. Certain places, smells, sounds and visual cues can be examples of triggers. For example, someone who’s trigger is loud sounds, babies screaming, bright lights, and too many patterns, may avoid somewhere like a shopping centre or a grocery store. Or they may need to prepare before going, the preparation may include, resting before, having earplugs, wearing sunglasses, not going alone, having someone drive them, and/or having medication like pain killers or anti-nausea medication on hand.

These are just a few points of why chronic pain is a full-time job.

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