There is this fact, this highly important fact, that I want those people who plan to be part of my future, in any capacity, to know. It is something that my soon-to-be husband knew before we went on our first date. It's something that my closest friends have known since the day I told them I had been diagnosed. It's something that I think is critical for anyone close to those with chronic illness to not only know, but to truly understand.
My illness is for life.
I was born with it, and when I take my last breaths, I will still have it. It may seem better or worse, ebb and flow (it is a cycling disorder, after all), but it will always be there. Even in the moments when everything feels fine, feels "status quo". Even if I go days or weeks without an anxiety attack or dropping into depression, or an upward cycle into (hypo)mania, it will be there, lurking under the surface, ever present. It will affect me even when you do not see it affecting me, even when there are no outward signs, because I'll know that any day I could wake up and everything could have shifted on it's head. I'm never not aware of this. Every single day of my life is a surprise, even if nothing changes in my mood or anxiety level from one day to the next. The fact that nothing has changed is often a surprise. I may have a warning of a cycle. I often do not.
I can "beat" individual episodes of depression, anxiety, mania, in the sense that eventually, they'll be acutely over. I cannot beat them for life. There is always the chance that something will bring on my anxiety, even on a beautiful, warm, sunny day on vacation where it seems nothing can go wrong. Something will, at least to my anxious mind, and it will throw me into a tailspin. I'll try to reign it in, and sometimes I can. Other times, I struggle. I may be able to downplay it, or move on from it quickly, depending on the severity. But I may not. There's always that chance. And once it escalates, if it escalates, it will be awful. For you, and also for me.
I cannot calm down or relax on demand. No amount of meditation or yoga or healthy eating or sleep or exercise habits will "cure" me. They often help, but that is it. I can cycle numerous times a day, for no "reason" other than because I have a mood cycling disorder. I can wake up on edge, or even angry, at nothing in particular. If we're especially close, I'll tell you I'm struggling, and you'll know what that means. If we are not, I'll probably put on the mask as best I can. I'll take it off only when I'm in the comfort of my home, or possibly with trusted loved ones.
There will be times when I have to avoid or cancel plans. My illness will make it excruciating to go out in public, or even to see anyone. My options are to not go, or to spend the entire time trying to hold back tears and steady my body so that nobody can see me shaking, hoping nobody notices the emotional void I've forced myself into, which I must in order to pretend I'm OK.
You may have to spend hours, days, weeks, even months trying to remind me that I'm not hopeless and worthless, that my life is worthwhile, that you love me or care about me. You won't understand why, once you've said it a couple of times, I cannot believe it. So I'll tell you why - it's the equivalent of you trying to convince me the sky is green when it clearly looks blue to me. I physically am unable to see it as green, no matter how many times you tell me, no matter how many convincing arguments you make - because to me, it's blue. And even if I finally say, "Ok, it's blue," I'm only saying this because you told me it is enough that I'm just agreeing - not because it spontaneously now looks that way to me. This is the same. I'm often unable to see the value of myself. It helps when you tell me, greatly, but it doesn't make it so. It may never make it so. I ask you not to stop trying. One day, your kind words, said for the 100th or 1000th time, may save my life. Please know that, even when your efforts may seem to have no effect, they do. Just knowing you're making an effort does.
There are times I will take it out on you. I hate myself for this, and yet if I don't get it out somehow, I'll explode or worse, implode. I'll apologize profusely. I truly mean the apology. I hate taking it out on you as I'm doing it, yet it feels like if I stop this flow of emotion, I'll burst. Eventually, I'll exhaust as I would if I were sprinting at top speed. I'll then fold into myself, distancing myself from you because of this. I'll put a shell around myself, a cocoon. It's for you, not me. It's so that stop taking it out on you.
I'll need to be by myself. It's nothing against you. I need to recharge. I need to be alone with myself, to try to understand what's going on. I need to eliminate all outside influences for a short while, maybe even just an hour or so, and that means you too. I'll be back, but I need this. It's because I care about you that I'm doing this. It's because I want to be my best self for you, and I cannot if I don't have time to replenish my emotional stores.
There are times I'll scare you, and probably scare myself. Not intentionally, but because you cannot understand how I'm feeling. There are times you won't recognize me. There are times I won't recognize me. I ask you to hang on. I understand how difficult my illness, and I as a result, can be. I am working hard, every day, to become healthier, even when you may not see the efforts.
If you plan to be a part of my future in any way, please know these things. We are a packaged deal, my illnesses and I. There is no me without them. It will be worse at times than it even sounds here. There are no words to truly describe what it's like in the first person. I'm doing the best I can to give you a heads up. Please know, there is an upside. My emotional depths mean that you could trust me with your life. My loyalty is steadfast. I often do for others at the expense of myself. I am a giver that will give beyond what most think possible. Those in my life, those who choose to be, are everything to me. I can, at least, promise you that.
My illness is for life.
I was born with it, and when I take my last breaths, I will still have it. It may seem better or worse, ebb and flow (it is a cycling disorder, after all), but it will always be there. Even in the moments when everything feels fine, feels "status quo". Even if I go days or weeks without an anxiety attack or dropping into depression, or an upward cycle into (hypo)mania, it will be there, lurking under the surface, ever present. It will affect me even when you do not see it affecting me, even when there are no outward signs, because I'll know that any day I could wake up and everything could have shifted on it's head. I'm never not aware of this. Every single day of my life is a surprise, even if nothing changes in my mood or anxiety level from one day to the next. The fact that nothing has changed is often a surprise. I may have a warning of a cycle. I often do not.
I can "beat" individual episodes of depression, anxiety, mania, in the sense that eventually, they'll be acutely over. I cannot beat them for life. There is always the chance that something will bring on my anxiety, even on a beautiful, warm, sunny day on vacation where it seems nothing can go wrong. Something will, at least to my anxious mind, and it will throw me into a tailspin. I'll try to reign it in, and sometimes I can. Other times, I struggle. I may be able to downplay it, or move on from it quickly, depending on the severity. But I may not. There's always that chance. And once it escalates, if it escalates, it will be awful. For you, and also for me.
I cannot calm down or relax on demand. No amount of meditation or yoga or healthy eating or sleep or exercise habits will "cure" me. They often help, but that is it. I can cycle numerous times a day, for no "reason" other than because I have a mood cycling disorder. I can wake up on edge, or even angry, at nothing in particular. If we're especially close, I'll tell you I'm struggling, and you'll know what that means. If we are not, I'll probably put on the mask as best I can. I'll take it off only when I'm in the comfort of my home, or possibly with trusted loved ones.
There will be times when I have to avoid or cancel plans. My illness will make it excruciating to go out in public, or even to see anyone. My options are to not go, or to spend the entire time trying to hold back tears and steady my body so that nobody can see me shaking, hoping nobody notices the emotional void I've forced myself into, which I must in order to pretend I'm OK.
You may have to spend hours, days, weeks, even months trying to remind me that I'm not hopeless and worthless, that my life is worthwhile, that you love me or care about me. You won't understand why, once you've said it a couple of times, I cannot believe it. So I'll tell you why - it's the equivalent of you trying to convince me the sky is green when it clearly looks blue to me. I physically am unable to see it as green, no matter how many times you tell me, no matter how many convincing arguments you make - because to me, it's blue. And even if I finally say, "Ok, it's blue," I'm only saying this because you told me it is enough that I'm just agreeing - not because it spontaneously now looks that way to me. This is the same. I'm often unable to see the value of myself. It helps when you tell me, greatly, but it doesn't make it so. It may never make it so. I ask you not to stop trying. One day, your kind words, said for the 100th or 1000th time, may save my life. Please know that, even when your efforts may seem to have no effect, they do. Just knowing you're making an effort does.
There are times I will take it out on you. I hate myself for this, and yet if I don't get it out somehow, I'll explode or worse, implode. I'll apologize profusely. I truly mean the apology. I hate taking it out on you as I'm doing it, yet it feels like if I stop this flow of emotion, I'll burst. Eventually, I'll exhaust as I would if I were sprinting at top speed. I'll then fold into myself, distancing myself from you because of this. I'll put a shell around myself, a cocoon. It's for you, not me. It's so that stop taking it out on you.
I'll need to be by myself. It's nothing against you. I need to recharge. I need to be alone with myself, to try to understand what's going on. I need to eliminate all outside influences for a short while, maybe even just an hour or so, and that means you too. I'll be back, but I need this. It's because I care about you that I'm doing this. It's because I want to be my best self for you, and I cannot if I don't have time to replenish my emotional stores.
There are times I'll scare you, and probably scare myself. Not intentionally, but because you cannot understand how I'm feeling. There are times you won't recognize me. There are times I won't recognize me. I ask you to hang on. I understand how difficult my illness, and I as a result, can be. I am working hard, every day, to become healthier, even when you may not see the efforts.
If you plan to be a part of my future in any way, please know these things. We are a packaged deal, my illnesses and I. There is no me without them. It will be worse at times than it even sounds here. There are no words to truly describe what it's like in the first person. I'm doing the best I can to give you a heads up. Please know, there is an upside. My emotional depths mean that you could trust me with your life. My loyalty is steadfast. I often do for others at the expense of myself. I am a giver that will give beyond what most think possible. Those in my life, those who choose to be, are everything to me. I can, at least, promise you that.
I think this is a valuable post, Maya and hope it gets a good read. While I don't believe that identity is either fixed or singular, the idea of trying to "cure" who someone is only leads to misunderstanding and frustration all around.
ReplyDeleteI agree 100%. An illness, just like anything in a person, can change over time. But sometimes the idea of "this isn't going away" and the reality of it are two very different things. And as you say, trying to change it, either from the person themselves or those close to them, only leads to further frustration.
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