The last few weeks have been rough. There’s no specific reason for it, there’s nothing that I did or didn’t do that precipitated these last few weeks of exhaustion. Not that I can quickly tap off on my fingers. I could blame my New York trip but, it was well worth it if this was the price. Even though I have been struggling with chronic pain and chronic fatigue for a couple of years now, the advent of new diagnoses has also made it difficult, I think, to know any specific patterns yet. Maybe I will understand myself better and what specifically sets off one of these episodes where I can’t do much besides focus on me. Which leads me to where I want to go with these thoughts and the inherent, selfish nature of self-care that sometimes garners you these eye-roll looks, like “Wow, I wish I could laze around and watch Netflix under the guise of ‘self-care.” But what the non-chronic community fails to understand is that we put so much effort into functioning and seeming normal that (not only do I think every last one of us deserves an honorary Academy Award) but we truly need these periods where we focus on us and how to best care for us, so we can turn around and do it all again.
One of the things I hear time and again from people who eventually discover that I have chronic pain and chronic illness, is that I don’t “look sick.” It is so common to hear among those in the chronic community that there are a bevvy of memes covering it and countless blog posts over it. Why is it that the vast majority of us don’t look like we are struggling with some kind of chronic issue, besides the fact that for most of us our issues don’t present like the flu or the common cold? Simple answer: Many of us, I won’t speak for all, work hard at it. We work hard at looking “healthy,” we work hard at not seeming like we are sick, for the sole reason that once people find out, I don’t think this is a hard word to use, but we become anathema. I am using anathema as the common usage which typically means someone who is shunned. (It can also mean someone vehemently disliked, but I feel shunned is more appropriate here.) I know many of us have felt this. I know many of us have lost friends because of it. It might not be outright shunning; people don’t have to be mean about it, but there is a distinct pulling away until you simply don’t hear from friends you used to. I think the biggest reason why is that people outside chronic pain and illness do not know how to relate to us and they don’t know and maybe don’t want to, put forth an effort to learn how to involve your friend in your life. Let’s face it, many of us have painfully watched as our limitations grow. Things we used to be able to take part in become a distant memory and all of us- every last one of us- mourns who we once were. But that doesn’t mean that we cannot participate in life or in the lives of our (non-chronic) friends. Adjustments might have to be made but I think a great many of us would love it if our friends took the time to think how they could remain involved in our lives and vice-versa.
Returning to the more specific thoughts of self-care- all of us have to take time out at some point to pay attention to ourselves. It is often exhausting to the point of tears, simply trying to keep up with all the mundane things we once took for granted. I have listened to people’s disdainful commentary on how someone could get so bad that they have to be reminded to take a shower or to take meds. I think what is lost on many people is the all encompassing drain that chronic illness/pain can have on the human body and this includes the mind. You find yourself in a situation in which you are constantly ready for battle and constantly battling all aspects of your illness/pain. You plough through your days and nights (many sleepless nights) simply to function the way you did previously in your non-chronic state. It is quite without exaggeration, a marathon battle that begins the moment you open your eyes till the moment you close them. I cannot even emphasize enough, the impossibility of managing all of this if it weren’t for the super-human-tenacity of our mind that gives us the will and drive to get through it. It is not beyond reason that despite this super-human-tenacity, our mind yields to the self-imposed-pressure of trying to function as though we are healthy. Think for a moment. We’ve all listened to people talk about how exhausting it was to live a lie. It might have been living straight and they were gay, or hiding an affair, or hiding illiteracy or how they grew up in poverty, but it all ends the same. Exhaustion of the mind from having to continuously live as someone they are not or hiding something about themselves from people. We do it daily. We do it daily sometimes out of necessity because if we didn’t we might lose our job. They might not tell us we lost our job because we are ill; they will simply say you are not performing as well or able to keep up, or you’ve missed too many days of work. We do it daily so that people don’t see the kind of pain we are living in because suddenly, when they do know, we are faced with pity. Pity sucks. And still, the idea of self-care, is beyond the cognitive understanding for some though they wouldn’t question the need for a pint of ice cream and chocolate after a break-up. This is when I like to shout-out: “Hey..that is a form of self-care!”
The idea that self-care is selfish is funny to me. On the one hand I suppose if you look at it like the example I just gave, binging on ice cream and chocolate after a break up, sure. Selfish. But even-so, I don’t think there is anything wrong with a little decadent attention to ourselves. In this case, however, it is not anything decadent but those things that most people take for granted as just what is expected of us when we are adulting. I am going to add in here too that everyone practices self-care and that really, all of us benefit from self-care. Now, there are also things that encompass self-care that can be construed as “decadent” behavior, such as when I declare it is pajama day and that I’ll be binge-watching on Netflix, in bed with heated blankets, pillows and my favorite sweets. I think we’ve all heard the infamous, “Wow, I wish I had some chronic illness so that I could stay in bed and just be lazy and not clean..” I know many of us are instantly frustrated by this kind of reaction. I mean we are living with chronic illness and wouldn’t wish this on anyone, and for someone to be so callous and say something like that makes us understandably angry. But the non-chronic community has no idea what we go through. And truly, as I have told some people who have asked the question, “How do I make [insert name here] understand?” The sad answer is that you really can’t. You can perhaps be lucky enough that whoever you might share all this with can empathize with you, but that they will truly understand? No. I think to truly understand some things in life, you have to actually live it. You have to be immersed in it. So, don’t shoot for understanding, simply convey your thoughts in a way that they can maybe empathize with you.
My closing thought: self-care is necessary. It is selfish in a good way and needed in our life to continue to function as best we can. So, self-care often.
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