Frustration is almost guaranteed at some point if you suffer from chronic illness. You are placed in a situation where it’s likely you lack the ability to get out by yourself, but yet it seems everyone is expecting you to get out of the situation on your own, family, doctors and society as a whole.
There’s a pervading sense in society of expecting everyone to pull themselves up by their own bootstraps, economically and in health related situations too.
Support for health mostly revolves around being told how you can do things differently to help yourself. If you already have this knowledge, then the majority of this verbal or written support is mostly useless.
(Ironically most of this article is the same, it basically conveys what you can do with your mentality about chronic illness, but the difference is that I write this mostly for myself. If others find it helpful, that’s good too. I hope that since this comes from a genuine place, rather than some mass printed clinical guide for how to get better, then it has some merit for consideration. I also hope others leave comments of their viewpoints and that by interacting outside of their thoughts, it might alleviate some of their burdens.)
The source of society’s viewpoint, is essentially that as an adult, society and life dictates responsibility for each person to solve their own problems, even if they didn’t cause their own problems. Society tends to degrade anyone who can’t solve their own problems, it labels them as scroungers, layabouts, deadbeats and so on. Ignoring the fact that no being in this world wants to suffer.
It’s only in recent history that people with visible disabilities have received some sort of mass empathy from society, and it’s only in mostly Western countries that these people get any help, depending on which government party is in power, the disabled can still face opposition to getting their support.
Capitalist society thrives on the idea of winners and losers. If you aren’t rich when you become ill, then there is very little in society there to really help you, you rely fully upon your immediate family and your own willpower, and if you don’t have immediate family or good friends to help you, then you feel truly on your own, it’s an exceptionally difficult situation to find yourself in.
There is a duality that everyone is alone, but also everyone is connected and rely upon each other. The frustration of chronic illness, can be mostly about needing to rely on others to help you, feeling like you are a burden, being put in a position that you simply cannot rise out from by yourself. Everyone has problems and burdens, and you suffer thinking that you add to the burden of those around you, that you don’t lessen their burden.
This frustration is likely draining you of energy that you desperately need. It’s a negative emotion, that resolves around self hate, that society has programmed you to believe that you are a burden if you don’t help yourself, and since you can’t help yourself, you’re a loser and a failure.
The energy in this frustration should be redirected, firstly into a positive hatred or resistance, you can try to focus on how much you hate your situation and illness, not yourself. This illness has been inflicted on you, you aren’t the origination of your suffering. It’s the illness that is causing the burden, not you. Resistance is key, not letting it control you, in it’s attempt to drain you; resist. Try to turn your frustration into anger or resistance, and then into motivation.
Fighting illness requires energy, mental and physical. One main focus as a chronically ill person should be managing your mental and physical energy. This is ultimately what we call pacing. Pacing isn’t just doing less, so that you feel better. It’s understanding what you can and can’t do before you enter a further negative state. You need to spend a period of time, understanding everything you spend energy on, and how that affects you. Does a 10 minute walk, exhaust you? What about a 5 minute walk? What about a 2 minute walk? What about walking up the stairs?
With trial and error, you should be able to find your baseline. The real problem with pacing, is responsibilities.
Responsibilities chain our energy to required tasks. If you have children, or a job you can’t afford to lose. How can you have energy left over, if those responsibilities are draining you of everything you have. There’s simply no room for pacing to happen. You exhaust all the support you can muster, and rely on whoever you can. It’s still not enough, if you’re lucky you’re stuck, if you’re not, you’re spiralling down even more, to a point where you can imagine everything you hold dear being at risk.
There’s no easy answer to these responsibilities, we all value things differently. In the realm of children being your responsibility, there’s not much you can do, but seek support from those who also care about your children, family members or close friends. If you don’t have those, you are truly stuck until your children reach maturity. If your children require special needs, then you are even more stuck, you are totally reliant on the government or charities for help. So all you can do is to seek out that help, and hope you strike lucky eventually.
With work responsibilities, depending on your situation, you can be trapped. Usually something has to give. Ideally you find a job with less hours, and the same pay. It sounds like a dream. You likely have no energy or time to escape this situation. A known solution is to make a plan and make small steps towards it. At least by recognising the situation and having a plan, you’ll have a glimpse of an escape. It’s hard, and frustrating. Words don’t really help these things. It seems we’re all just prisoners of our situation until luck lets us free.
Luck is definitely a defining factor in getting better. But one of our most important tools is motivation, and what I really want to communicate is how frustration can sap you of your motivation. You need to convert it, and not be so hard on yourself.
Because everyone is different, there isn’t a direct method to converting frustration into motivation. It comes down to general advice, such as identifying your values and dreams, forming plans towards them. If you’ve ever had therapy, you know you’re told about values and working towards them, identifying them if you can’t. You can work out what you need to change in your life first, what’s draining your energy the most, and what you could do to lessen that drain.
It does sound cheap to say, “Oh just turn all your negative emotions into positive ones!”, after all there are important reasons you might be having negative emotions, and it seems perverse to suggest ignoring those reasons. I don’t really want to say it’s a matter of being positive or negative about everything. Positive and negative thoughts are out of your control most of the time. It’s more about controlling where your energy goes, deciding where to put your energy. Don’t think of motivation only as some perky go-getter attitude, motivation can be dark and depressing too, after all it’s simply a reason for behaviour. Acceptance and having a more useful perspective are probably the main ideas that help you cope with all that sits on your shoulders.
It’s good to be responsible for yourself, but when you’ve tried everything you can for years, you can be sure that you aren’t to blame for being a burden, it’s the illness that is the burden, not you. Don’t let the judgement of society and others get to you. No one can understand suffering until they themselves suffer the same. It’s all from ignorance, and the world is full of it.
true, but it’s easier said than done, or rather, it’s easier think than done.