Impositions.

Introduction: I was recently told, while talking about how rarely I’ve been able to explain my disease in any meaningful way to those around me, that I don’t have enough faith in people.

So, talking about chronic illness isn’t easy. I’ve learned that from time to time it’s necessary, both for my own sanity and possibly for purposes of public awareness. Even when I feel the need to get something disease-related off my mind though, it’s still tough to talk about the majority of the time. That said, I’m sure it isn’t easy for people to listen to, either, and that’s what this post is about. I’ve had people shut me down mid-sentence and tell me that I should really be talking to a “professional,” get frustrated at their lack of ability to solve my problem (which I don’t expect a solution to – sometimes I just need to vent), get upset and tell me how sorry they are every time they see me because they’ve decided that my existence is so difficult that it warrants regular apologies…there’s a myriad of reactions, but the truth is, most of them aren’t good. Or at least not particularly helpful, and in many cases, my venting seems to have left a permanent imprint on the mind of the listener in some negative way. Perhaps I’m reading too much into people’s reactions, but the deeper I delve into my story, the more likely people are to display a little bit of the anger, frustration, and sadness that I myself have felt when considering my situation.

Now, it would be really egotistical of me to assume that in a couple of afternoon heart-to-hearts I’ve made such an impression that any negative feelings actually come into their daily lives because of it. Actually, those feelings would probably only occur when they ran into me, possibly only even if they ran into me and I happened to be having a bad day or feeling sick. But the point is, no matter how minimal it might be, that is anger and frustration and sadness which wouldn’t exist if it weren’t for me unburdening myself on them.

Of course, if a relationship of any kind goes on long enough, chances are we’ll do something or say something that is hurtful to the other half of the pair, but in this case, it would be doing so with conscious knowledge of what the reaction will probably be. So, the question that I have written this post to pose is, at what point should we keep it to ourselves? Just box away our feelings instead of consciously hurting another human being with a story of a painful past. Or, probably smarter, try and get as much catharsis as we can out of, say, writing about it instead. That’s a big reason why I started this blog.

I’ve had people become so frustrated, and say “Oh, but I’m happy you trusted me with this though!” I’ve recounted events from previous hospitalizations only to look up to see my friend in tears at something that I didn’t think was all that terrible, and then tell me “I’m glad that you feel like you can talk to me.” Okay, well…neither of those things is “I’m glad you told me.” It’s, “I’m glad you trusted me.” Very different things, or so it seems to me. Because then when the seemingly inevitable distancing follows, it sure doesn’t feel like they’re happy I told them. It seems like they don’t know how to react, like they don’t want to deal with it, like a lot of things that aren’t “I’m glad you told me.”

We need to talk about it. I need to talk about it. I spent a large part of my diagnosed life, until I started college, really, not saying anything to anyone about it. I would smile and nod and say “I’m feeling well today.” I would lie through my teeth. On the days I couldn’t lie, I would isolate myself to avoid having to tell the truth. After years of being questioned and doubted pre-diagnosis, I was terrified of what the reaction to the truth might be. While eventually I did start to open up, I can’t help but feel as though I’ve predominantly succeeded in hurting those around me, and making the relationship more difficult in the process. Once those words have been said, they can never go away. Once you expose those weaknesses, you can never be seen without them again. Maybe that isn’t a bad thing, but it is a scary one, and maybe, in the end, the costs don’t outweigh the benefits. I don’t know.

Conclusion: I was recently told, while talking about how rarely I’ve been able to explain my disease in any meaningful way to those around me, that I don’t have enough faith in people. I was told this by someone who was having a visibly hard time handling the things I had told him about my disease. Distancing ensued.

Self-Destruction.

Sometimes, I wonder if having a body that destroys itself has made its owner (me) more prone to help it along the way. Or at least, not to hinder it’s destruction. I suppose I should preface this post with the fact that I don’t drink, smoke, or do drugs other than the ones that have been prescribed to me, nor have I ever done these things. I do exercise when I’m physically capable, although that’s not too often these days, and I’m generally a person who could be qualified as a “health nut.” Generally. Not always.

In addition to being a freak about my health on the surface, I’ve also developed this nasty tendency towards less visible but still self-destructive behaviors. In some ways, one might even say that I’ve become a bit masochistic. When I’m curled up in a ball on the floor, in extreme pain and unable to move, sometimes the only thing I can do to keep myself from screaming or crying out, begging for help in an empty room, is to dig my nails into my arms. At the time, the pain from that seems minor, almost non-existent in comparison to what’s happening internally, but I’ve on occasion woken up afterward with scratches down my arms so deep that I’ve had to wear long sleeves for weeks to avoid the questions which would inevitably come.

This tendency to create new pain to distract from the old, greater pain to distract from the lesser, is clearly not a good one. At the level that I’ve discussed, it probably isn’t dangerous, but it definitely isn’t beneficial either. That said, I don’t have much of a solution to this unconscious habit which I’ve developed. It’s hard to explain, harder to justify. It sounds slightly insane. After all, creating more pain is hardly a solution, right? But in the moment, it’s the only solution there is. There’s no pain medication that will take off the edge, unless it’s during a period of hospitalization and I have access to a morphine drip. Once we start talking drugs on this level, addiction becomes a very real issue.

Then, there’s food. Granted, I’m surely not the only sufferer of CD (or IBS or UC for that matter) who has a difficult relationship with food. It’s necessary for survival, but also simultaneously causes extreme pain…I’m starting to figure out where my masochistic tendencies come from. In any case, I’ve spent a lot of my life not eating by necessity. I physically couldn’t keep food in my system, and when I tried, malabsorption stripped me of any benefits anyway. I’m lucky now in that a lot of the time, if I’m careful about what foods I choose to eat, I can actually eat. And yet, sometimes I don’t. Because sometimes, the only thing about my body that I can control is what I put into it, and it’s just easier to not put in anything at all. Yes, I know this isn’t healthy. Yes, I know this is a warning sign for an eating disorder. I’m working on it. But that’s not the point of this post.

The point, I suppose, is this: it’s so hard, so frustrating, to do everything right, and still have a failing body. While I do realize that the little things do make a difference, to some extent it doesn’t matter how healthily I eat, how well I sleep at night, how hard I work out, or anything else. I never had a chance, and that’s hard to handle. A sick body shouldn’t lead to self-destructive habits, but at least in my case, the honest truth is…sometimes it does.

Anxiety.

So, as some of you may know, and many of you may not, anxiety is one symptom associated with POTS. It’s a symptom that I have in spades, and it goes far beyond your garden variety “I have a test coming up that I haven’t studied for! What am I going to do?!” anxiety. It’s this constant, unceasing spinning of my mind, threatening at any given moment to send me spiraling out of control. Seeing a familiar face might bring me back years, to a person who I embarrassed myself in front of, and it may as well have happened yesterday. Hearing a single phrase in a conversation can take me straight into an argument that I regret getting into, hearing a song or smelling a certain fragrance might pull me into a childhood memory better left forgotten, or perhaps just a situation in which I should have behaved differently. All of these things are in the past, but when they come up to the surface, immediate and unpredictable, they take over my mind for that instant. Sometimes I can logic my way out of it, telling myself not to cry over spilled milk, that the people who I was interacting with likely aren’t still thinking about the incident ten years down the road…sometimes it isn’t that simple. Sometimes it lasts for days on end, eating away at my mind bit by bit, sucking all of my mental energy into this vortex of memory that I know is bad for me and at the same time can’t escape.

It’s times like this that I do something that I hate myself for; I take out the bottle of neurologist-prescribed klonopin, and swallow a pill. Half a milligram, that’s all it is, but it’s half a milligram that can send my spiraling mind into instant paralysis. Sounds nice, right? Well, it isn’t. Not always. Those little tiny pills make me calm. My mind becomes still. But they also create clouds of fog in my brain, making writing a grocery list feel akin to writing a novel. Stairs may as well be mountains, as my limbs become heavy and hard to control, and forget actually being able to hold a conversation.

I took one of those pills tonight, not long before I went to meet a friend for tea. I know I wasn’t good company. I was zoned out, staring into space, fighting not to slur my words. I couldn’t tell you what I said, I can hardly remember his words either. It’s all a blur, and that’s not a good thing. When I take benzodiazepines, I feel as though I’m having a permanent out of body experience. My body moves, my mouth speaks, but I am in control of none of it. I’m watching it happen, but I’m separate from it all. And the longer I stay in this state, the harder it is to go back. It’s at the same time terrible and addicting, which is why I severely limit myself from downing these little yellow pills, unless the anxiety is so impacting my day that I can’t get through on willpower alone. I tried to explain this to my friend, but I’m afraid I failed. To someone who has never taken these mind-altering drugs, calm is calm, there is no meaning to the term “false calm.” The feeling of peace can’t be “too perfect.” Nor can a lack of feeling exist, because people are always feeling something, right? These things are apparently a figment of my imagination.

Perhaps he was right, I couldn’t really say. All I know is that I also couldn’t say what I was feeling earlier, what I am feeling right now, even as the drugs are starting to wear off, because I don’t think I’m feeling anything. It is a false calm, my mind perfectly still, but my anxieties still there in the background, wearing away at the bars of their cage. It is too perfect. Think of it as an EKG. It shouldn’t be exactly straight. At certain intervals there are spikes in the line; that’s how you know you’re alive. When I take anti-anxiety drugs, my mind is a flatline. Those spikes of life temporarily cease to exist.

That’s not to bash the drug completely. There are times when I have needed it to get through the day, and I know that there are others who have and do as well. It has it’s benefits, its uses. Sometimes it’s a necessary evil, but I can’t help but feel that it’s an evil nonetheless. However, I don’t have a better solution. I don’t have an answer, so it’s an evil that, from time to time, I will have to swallow…literally.