Monday, April 27, 2015

An Open Letter

#HAWMC Day 27:  Living with an illness, you are more likely to face people who don’t understand your daily struggles. Sometimes, these people can be inconsiderate and hurtful. Have you ever wanted to tell them how you really feel, but didn't feel like you were able to? Now is your chance! Write an open letter to the people who have hurt you. What would you say to them? What lessons would you like them to learn?, whoever you are that reads this and doesn't understand,

While I’m tempted to be sarcastic and snarky, which is my natural tendency when I’m hurt/frustrated/sad/angry, often as a form of self-defense, I will refrain. I think I covered that decently well a couple of posts ago. Instead, I’m going to try say what I think I need to get out, and you need to hear, in an educational and calm manner.

You don’t understand me. You may know that. You may think you do, you may even try to, but by virtue of the fact that you've hurt me (intentionally or otherwise), I know that you don’t. Because I’m not writing this to those people who have understood and said “I just can’t handle you.” They get it, they just don't want to be around it. I can accept that. Being supportive in the way I need isn't up everyone's alley and while I personally think that sucks, I get it, and I respect their honesty. I'm not easy, nor is my condition. I understand that as well as anyone. Hell, sometimes I don't want to be around myself. So, I’m writing this to the people who think they “get me” but don’t (that would be all of you who right now are saying to yourselves, "I don't need to read this, I totally get her"). Or the people who haven’t tried to get me. Or the people who just somehow can't fathom that my views of life aren't the same as theirs (doesn't everyone love feel better in big parties of people, drinking to relax?) Or they do, but they are so sure theirs is right and mine is screwed up that they refuse to even listen, to even consider that mine might not be better or worse, but just different. I'm even writing this to the people who want to get me and can't quite manage it yet. Because maybe this will help. and we can somehow reconcile our views.

I have an illness. A disease. I've had it since birth. I haven’t always known what it was, but I've known that it’s there. I see the world differently than you, and while in concept this might make sense to you, in actuality, it is "weird". I don’t see the world on the sliding scale that you do. The world in where things are horrible, bad, not so great, neutral, OK, decent, good, great, phenomenal. I see the world in three ways: Bad/awful/terrible/painful/urgent, I can’t feel anything, great/exciting.

My world doesn't have, or very rarely has, contentment. It doesn't have OK. It doesn't have “eh I’ll have to deal with that but no big deal”. Perhaps you could think of me as emotionally color blind. You have the whole rainbow. I have black, white, and maybe a few colors that look one way to me and another to you. We may both know this, and we may both try to compensate, but unless you've actually seen through my eyes, you'll never know exactly what your "green" or "red" or "purple" looks like to me. This doesn't mean I don’t have “normal” days, but even in my normal days, I have to strain to feel things the way you do. I know you think I’m not trying, that I’m making excuses, that I could choose to see the world the "right way" if I tried. Trust me, I try. You might not see the effort, because I might fail, but I'm trying. And in trying, I get more frustrated, I doubt myself, and my cycling gets worse, and my view of two end of the spectrum only intensifies.

I know that because of this, you think I’m too anxious, too high strung. That I can’t relax – which is not true, by the way, just watch me while I'm writing or reading, and you’ll see me relaxed. You think I’m too hyper, or annoying (in my hyperness and excitability). When I’m hypomanic, yet trying to be normal but unable to control my energy or stop talking, you think I’m trying to get attention, that I’m self-centered. You don’t know that I’m desperately trying to stop it and can’t, that I’m embarrassed even as it’s happening, that because of this, I actually hate attention on myself, and sometimes just hate myself and certainly my illness. It’s like holding onto the leash of a giant dog chasing a squirrel. You can pull with all of your might, and the dog is still going to drag you. That’s what happens to me in hypomania. I'm dragged through it with zero to very minimal control, or at least that's how it feels.

I know you think I’m no fun. I get too self-conscious, too easily upset. That makes me more self-conscious, more anxious, and less fun. I can't enjoy myself because I''m constantly hoping "please don't cycle, please don't have an episode."  And then I do, because I'm so stressed out that I cycle. And when I cycle, I'm either crying my brains out for "no reason" in the middle of a get-together, or I'm hyper and annoying and "attention seeking" (as you call it). So next time, I stay home. Out of what? Embarrassment, worry, panic?

My self-esteem, you think, makes me negative or mopey or jealous. But given the situation above, and how I know everyone feels about it, about my, when it happens, how can I possibly not be self-conscious, not feel badly about myself in others' presence, not worry? I’m not trying to ruin your time, honest. But I can’t drink much these days (it seems this is a primary fun activity of those I surround myself with, and there are very few social events that don't involve alcohol). Drinking makes me horribly depressed. I can’t stay up past about 11 PM at the latest because I’ll cycle worse if I don’t get enough sleep, and my cycling makes it impossible to sleep in at all. When I’m in a group and not emotionally close to everyone, the walls start to close in. I can’t breathe, my head starts to spin. Anxiety rises. I panic. I don’t mean to freak out, it just happens. I didn't even want to go to this... gathering, whatever it is… but I wanted time with you, and you were going, so I went, despite myself, despite knowing the risk. In turn, you'd probably rather I'd stayed home. So do I.

I've learned not to ask people to rearrange their plans on account of my anxiety. When you say "hey we're having people over for drinks" I know not to say "could we stay home and play cards (the non-drinking game kind) instead?". I get strange looks. You’re all social people, extroverts, without social anxiety. The more the merrier, right? Not for me. For me it’s the more the scarier. I think you and I are doing something, and it turns out to be 10 people. Walls. Closing. In. But I went, to try to be “normal”, in hopes that maybe, maybe this time, I could pull it off.  But that was a worthless hope. Because I can’t live in your world.  I don’t care about many of the things you care about and I certainly don’t care about sharing them with 30 of my closest friends. It’s nothing against you and your way of living. I wish often that I fit the norm. It’s just not how I’m built. I don’t want 30 close friends.  Three is just fine. Three people who truly get me, value me, for exactly who I am. (five would be fine, ten is my limit, and we can't all get together at the same time). Three people that would come over and drink coffee at my home or a coffee shop and talk about my health advocacy work or the books we just read or the book I’m writing, and not consider it a sacrifice but a good time.

Maybe you think I’m wrapped up in myself, my brain, my illness. Of course I am. How can I not be? It follows me around like a shadow. I have to think about it every day and work my day around it. What and when to eat, what to do, when to wake, when to sleep, which meds to take when. When I try to forget it just for a little while, it comes back, reeling at me, like an ugly monster. (You think you can stay up late? You think you can have fun like the others? You think you can pretend I don't exist? I'll show you!).

I don't want to lose people from my life. I'm not writing this to say, "you aren't like me and I'm not like you so our friendship is dissolved." I love my friends. I want them to understand. Because maybe then we can both be ourselves and meet in the middle. That would be amazing.

I’m sorry if we can’t come to an understanding – and understanding of who I am and how I need to live my life. I’m sure I’ll miss you. I’m less sure you’ll miss me. But I don’t have a choice. I've spent 35 years putting other people’s lives and happiness first. Thirty five years trying to be someone I thought I was, hoped I was. It's high time I stopped all that, and started to actually be me. 

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