Losing connection with yourself and all of the relationships around you, AND, how I managed to deal with becoming a stranger to myself and who I used to be.
When I first became ill I didn’t have the time to think about all of the ripple effect of what it would mean to have this illness extend well beyond the timeframe anyone would tolerate or even believe to be a one-off. Much like catching a cold, we all somewhat expect for it to rectify itself and recalibrate to “normalcy” within a week or two depending on how effective ones personal immune system is. Even with CSF Leaks, there’s a bit of a timeframe to which someone can expect to, at minimum, get better.
But what happens when your illness becomes chronic? When it becomes a horror show of reoccurrences; not a cure, full diagnosis, remedy, or end in sight? At some point the inconvenience becomes increased exponentially, and the fallout of your “new life” starts to trickle down until the container you’re holding it all in either overflows or straight bursts.
And that’s when the real roller coaster ride begins.
Not feeling well is something most people experience but often times it is fleeting or if not it is low-grade and because of who we are as a people, we always find ways to get on with life and manage the discomfort whilst handling life head on.
But when your pain ranks at minimum 8 out of 10 everyday and small tasks become more and more cumbersome to tackle; when every movement begins to require a recovery period….it really starts to hit you. I’m not well. You end up being unreliable to everyone in your life. You become a habitual plan-canceler, you opt out of all work because no employer would hire someone who needs to flexibly call out 4 out of the 5 work days in a week (and 6 out of 7 days for all you entrepreneurs).
As you spend most of your days being poked and prodded by doctors and the never ending procedures, and you’ve tried every diet, cleanse, and/or vitamins and medication….and still you haven’t gotten better. The once blurry picture of your life and how it’s gonna be for the foreseeable future, becomes VERY clear. And then, depending on who you are, the depression kicks in. It kicks in for all of the obvious reasons, but the reason I’d like to touch on more so is the fact that you begin to mourn the person you use to be. You can’t let go of the vibrant being you were and your days become filled with failures, and inability, meds and doctors appts, and you feel the ever so loud vibration of the burden you have become on the people in your life. It doesn’t matter how much they love you or how supportive they are, they are still human. And, those vibrations can be felt no matter how minuet. It weighs on you.
How do we Spoonies often deal with this? Often times we over compensate….even if it comes at a detriment. Often times we’re running on a deficit (In a future post I’ll elaborate on that). But when you become a chronic-illness/pain veteran some things tend to shift. It isn’t always a bad time, you end up learning new things about humanity and yourself. You end up expanding on already existing personality traits (if you’re anything like me; I’m a giver and indulge in introspection/self- improvement). Your empathy truly flourishes and it is something to behold.
You start to see the world and life under a very different scope. People’s problems start come to the surface and you begin to view them in a different way. You come face to face with your mortality and in many ways come to terms with it. Now listen, by no means am I setting timeframes for all of this “growth” nor am I saying that making peace with what is happening to you doesn’t require a revisit from time to time (sometimes often), but you begin to manage your expectations alongside managing your health and your pain while tackling responsibilities. It’s a balance that I have yet to achieve and that I fight every day to. Plus, I fight for peace with self every day, several times a day….and I still haven’t mastered that (I’ve been dealing with chronic illness since 2007, but the CSF leaks didn’t hit until 2013…..so I’ve been at it for quite some time).
It’s hard to become a stranger to yourself and to the people around you. They too remember who you used to be and often times it isn’t just the emotional and mental turmoil you go through on a personal note, but the turmoil that’s triggered by the expectations others place on you because they themselves haven’t come to terms with who you are NOW. They don’t mean to, that’s just how ableism works. And trust and believe you don’t have to be able-bodied to be an ablest. That shit runs rampant amongst the disabled community (that’s for a future post too, we gotz some splaining to do).
All in all the way I’ve gotten to where I am mentally and emotionally is through the practice of giving grace, celebrating even the small triumphs no matter what they are (taking a shower, putting on clothes, cleaning, partaking in a hobby, waking up, etc…), getting to know myself for who I am and how I present to the world NOW, setting and hold to boundaries, only doing what I can and releasing guilt/shame & the shoulda/could/wouldas, advocating for myself unapologetically, and remembering that mind is my biggest hurdle…then my body.
It seems like a lot and in many cases it is, but remember to take care of you the best you can, tackle one thing a day; you’ll see a difference in how you feel overall. Not “perfect” but in many ways good enough. And when you get those good days, revel in that shit like there’s no tomorrow, because it isn’t guaranteed.
What I’m Wearing: