When You Live With a Chronic Illness, Time Runs Differently #rwanda #RwOT #AskCuppyAnything

You seem to forget that I’m constantly treading water. Day in and day out, I am trying to stay afloat. You forget the totality of all I have to juggle. Nine chronic illnesses, three mental illnesses, never-ending, all-encompassing pain. I know I carry it well. I make it look easy, manageable. So you forget. And you expect things from me. Things I can’t give. Things I shouldn’t have to give. You’ve gotten so used to my ability to overcome, you believe I should take everything in stride. No one should have to live up to expectations like that.

I am allowed to take breaks, whether you approve of them or not. I am allowed to feel things in ways you may find unacceptable. I am allowed to prioritize things differently than you. I have a perspective that you may never understand, but that you must accept. And if you do something that puts me at risk, or triggers me in any way, you may not dictate how I respond. For years I have lacked bodily autonomy. My body is not under my control and I have adjusted to that. At times my mind hasn’t been under my control, and I adapted to that as well. I learned to go with the flow and function in something that is, at its core, wholly unpredictable. I’ve come to realize, however, that I can control how I react to the situations I find myself in.  Situations you put me in. And you do not get to say a damn thing about it.  You make decisions, and sometimes the consequences of those decisions involve me. If you break my trust, you don’t have the right to critique how I rebuild.

The funny thing is, usually all I need is some time. Time to sit with my reality, ponder it, accept it and engineer a way forward. How much time?  My time frame is different than yours. Your able-bodied world moves fast — too fast. Whereas I live in limbo. Being disabled gives me an abundance of time alone with my thoughts. It took me years to adjust to this new way of life. I understand why you rush, I remember rushing, but I now live a life where absolutely everything I do and every decision I make have real, palpable, devastating side effects. Every little thing takes energy, and every day I wake up with my bodily low-fuel light already on. Because of this, when there’s something out of my control, I need time to craft a response to it. Please don’t forget that whatever issue we’re having is not the only issue I’m dealing with. For you it may be a very pressing issue but I am juggling so much at once that sometimes I simply can’t deal with one more thing. If I need to put our conflict to the side for a while so I can focus on other things first, I will do so. And you may not like that. You want action. You want forgiveness. You want a response and you want it now. You want me to make you feel better.  And that’s something that I inherently want to do, but I’m at the point in my chronic illness journey where I refuse to make others feel better if it is at any detriment to myself. I cannot afford it. I simply cannot afford to put the mental health of others above my own. I did that for years and I do not have energy or physical/mental health to do that anymore.

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What I need from you is time. Allow me to take my time. Allow me time to process and to reflect. Time to weigh my options. When I am ready, I will come to you and we will discuss and hopefully move forward. If you come to me (with anything besides an apology) before I am ready, the response you get will be an emotional equivalent of a rough draft. I won’t have had the time to work through my emotions, refining and compartmentalizing them.  I want to be able to work through things to the best of my ability, and I need you to understand that my process is different than yours. Overall, my well-being is my top priority; it has to be, regardless of whether you can accept that or not.


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