I want to say this, but I can't

This is a personal matter and a personal request for reflection on your part. I want you to mull this over. It's not really up for discussion; rather, it's something to think about in the spirit of examining attitudes.

No, I don't want to talk about it, I'm not being neurotic, and I'm not being critical. I'm just asking for sensitivity or a reasonable facsimile thereof if sensitivity is to be absent. Otherwise, my regular level of chronic sadness will only be compounded and I would rather know nothing than know something that makes me feel worse than I do on a typical day.

You've known me for nine years. I helped you start a career, find a husband, and attain citizenship. Because of this, you think you know me, you think you get it, but you don't. I know you, but the opposite has yet to materialize.

In the course of the past four years, I've tried to educate the people who know me about the difficulties I struggle with every day. And I do struggle along a daily path that is often grueling in its required effort, exhausting in its assault on my body, and, humiliating on many levels.

I really don't talk about much of anything of a personal nature anymore and I haven't for a long time. I try really hard not to, anyway, and that means that things have reached a point where there are some very huge gaps in what you (or anyone) knows about me, my health, and my prognosis. Only my doctor, my husband, and one friend have access to those facts. It is safer for me, safer for my future, but mostly safer in that it shields me from being talked about behind my back. There are a lot of details I must remember to keep to myself.

I never want my successes or failures to be blamed on my health, nor do I want to be held up as an example of what "people like me" are or do. I learned the hard way that as long as I just keep living up to expectations and others' perceptions, my life won't be up for scrutiny, speculation, or judgment. The only way to make sure I stay safe and under the radar is to shut up and keep up, at any cost. Any cost.

I doubt anyone has noticed just how deeply I've withdrawn, and that's actually a good thing--it means I am an outstanding actress and I am meeting everyone's needs and expectations, leaving no room for accusation or "See? I-told-you-so." If nobody is feeling disappointed by their interactions with me, then I am doing everything the way I need to in order to stay safe. Safe, safe, safe. I will be pleasant and friendly even to people I can't stand if it will keep...me...safe...from judgment.

It takes a lot of work to stay safe and out of the judgment zone. Every minute, every day, I am vigilant: Vigilant of my own behavior, vigilant of other's attitudes toward me, vigilant about listening to the words and attitudes of people around me, and vigilant about making note of what is said by those with whom I interact. People reveal a lot when they think it doesn't apply to the person with whom they are discussing a matter. What I see and hear is so abundant, I come home and write about it every night. It helps me see where there might be cracks in my own security walls.

Anyway, in all of that listening, I learn. I become aware. I take note and I see clearly what other people believe and think. Sometimes I wish they would be more careful, too, but we all wear our attitudes on the outside when we don't put enough effort into hiding them.

Here is an example. I am going to paraphrase a conversation, and I want you to think about how it sounds with a simple change in vocabulary that should alter nothing, yet, says everything that I, May Voirrey, need to know. Everything.

Sonja reaches over to the passenger seat and pats me on the knee. She says, "Don't take this the wrong way, but I think I see some symptoms of diabetes in Susan."

I reply, "Hmm. No, I don't see that at all. Although she does seem to have a lot of anxiety."

I think, "Well, yeah, I do have diabetes, but is she implying diabetes is something to be ashamed of? Should I worry that my medical condition is socially offensive, even to people who know me as more than just a pancreatic malfunction, a chemical blip??? Wow. Am I really something less because I have diabetes? It's not like there was anything on this planet I could have done to avoid having it. I guess I was absolutely right in thinking that people will say they've read the brochure and they understand, but in the end will talk about me behind my back if they find out I take insulin or that my illness affects how I feel from day to day. The world disappoints me yet again. Note to self: Never, ever mention the diabetes to anyone. You never know what attitudes people harbor, but my observations tell me that diabetes seems to carry a lot stigma, even among people who have the facts."

Do you know what my worst fear is in the whole world? My worst fear is that my husband will die. My second-worst fear is that my brain will stop responding to the many therapies it endures; therapies I endure so you and my husband (and only you two) do not reject me in my respective roles as employee and wife. Between you, you two determine whether or not I have something to anchor me. I endure physical and emotional discomfort you cannot imagine
not for my own wellness, but only so I can function in a way that is pleasing to my boss and my husband. But you probably knew that. I'm sure I said it before somewhere along the line.

Now I worry that my attempts at education haven't had any effect at all because it seems you look for evidence that "diabetes" is seeping through the tight seams I've stitched up so neatly around myself. Stop looking for what isn't there. Stop looking for it in other people. This particular illness presents so differently from patient to patient, it can be nearly impossible for a trained professional to recognize it as the same illness in two people who have it. You know that, right? No two cases are the same. Ever. When you imply that Susan has what I have, and that you know anything about how specifically the symptoms have to fit together to qualify as a diagnosis, you demean me with your belief that the illness is so ridiculously mundane that anyone can diagnose it. If only it were so simple. There is good reason it takes, on average, ten years of treatment before a correct diagnosis is made. It's not because patients don't seek help--it's because the helpers rarely get it right the first four times diagnosis is attempted. And those are M.D.s

One of the reasons I try not to talk about my cerebral anomaly is that (1.) nobody wants to know. Who gives a fuck, seriously, as long as I'm meeting my performance benchmarks in life? and, (2.) it doesn't change anything. Just know that if my brain ever betrays me again, I will not embarrass or disappoint you, my husband, or myself. I am a trooper and a hard worker and one who doesn't give up on things easily, but let there be no doubt: I will die before I will suffer again the way I did for four excruciating years. What I know that you do not know is how that time felt from my side of the fence. Had I known at the outset what was ahead of me, I never would have made that journey. Having made it, though, I remain obedient and compliant, doing everything that I have been instructed to do, never missing a step or stepping out of line. I am too afraid of the penalty.

I know that my illness is something that is likely to anger you, irritate you, disillusion you, and inconvenience you. I can't control how you react or what you believe, but your reaction did teach me the importance of not letting an illness be apparent if I need to be around you. You must always understand, though, that if my health seems compromised, it isn't from lack of vigilance and medical treatment on my part. I do what I can, nature does what it will. We fight about it every day.

This rambled a little bit, but there was a point. In the end, I'm left mulling something over, too. My illness is hard, but I don't see it as a source of personal embarrassment. When you said to me so condescendingly, "Don't take this the wrong way..." I realized that in that moment, I probably did understand you--and your perceptions--perfectly. What I heard is that you still perceive my illness as a personal shortcoming, and, it's offensive to say someone has it.