Out of the Chronic Closet

You are not obligated to hide your illness to make other people comfortable

I came out today in the Daily City target, and it felt amazing. A large part of my illness is that I go into states where I lose, to varying degrees, speech and muscle control. Depending on the degree of loss, I have tics, for lack of a medical or diagnostic term, that I can suppress with difficulty. For example, it feels good to moan or repeat sounds. It also feels good to rock back and forth or to tap my hands in a certain way. In combination with the dazed expression on my face and lack of coordination and/ or speech, I look like someone with a serious mental disability. I look like a "retard." So, in public, I hide it as much as possible.

Until today in Target. I had read the above quote (the full quote is below) and it occurred to me that I didn't have to hide. It meant people stared. It meant I made them uncomfortable. It meant they wished I was different. I could not have cared less. It felt wonderfully free to just let myself be as sick as I actually am. It was so much easier than hiding!

It felt much like when I was in my early twenties and dressed like a dyke in a very small town where the women all had fake tans, nails and boobs. Where Tri-Tip is God and so is Jesus. People stared. People were uncomfortable. Some people were mean. I could not have cared less. I was me and they were them. People are different; get over it.

It felt much like the times have I shaved my head too. People stared. People were uncomfortable. People told me I would be pretty if I were different. I could not have cared less. I loved my shaved head. I loved defying my gender role in such a public way.

I think, as women, we often put other people's feelings before our own. We are socialized to do just that and it becomes "natural" behavior. Well, there is nothing natural about trying to hide who I am. Partnered with a woman or a man, bald-headed or long-haired, healthy or sick...this is me. And with that, I'm out.

How do you hide? In what ways do you make yourself uncomfortable for the sake of other people or for cultural norms?

Gilding the Lily

With very few exceptions, I have chosen not to wear make-up most of my adult life. Make up was for special occasions only. It was a very conscious choice; I knew that if I got into the habit, I would start to feel ugly without it. I did not want, what I felt, was an unhealthy, confidence-draining dependence. I was proud to explain my decision if I was ever asked about it. Granted--and I do NOT take this lightly--I've had it easy, blessed with qualities mainstream society considers beautiful: white, thin, tall, blond hair, blue-eyes, clear skin. Had this not been the case, I'm sure I would have made different decisions...but as it was, I didn't feel the need to and that choice was easy to make. Here's a picture of me in graduate school:

When I was hit with a chronic illness a few years ago, this began to change. My face began to be nothing short of ugly most of the time. My palor sickly greenish, my lips lost all color, the circles under my eyes dark and pronounced like bruises. Here's a picture of me in the midst of my illness:

Because of this, I now wear makeup on a daily basis, often not leaving the house without it. As I expected in younger days, I feel ugly without it. I also take great care to dress myself very fashionably. I have a list of outfits on a ring by my bed, so that when I get up for work I can be sure to be best dressed in the office. I don't work without make-up on. Here's a picture of me at work:

I've learned that this costuming, one could call it, is very common for those of us with chronic illness. We want so badly to hide our illness, to be seen as more than our illness, to be seen as capable, that we spend a great deal of our most precious and most limited resource (energy) on beautification...at least many women with chronic illness do.

I have no idea if men perform similar rituals with the limited beautification supplies available to them. I would hazard a guess, however, that they do not simply because men are not judged by their appearance as harshly, and with as many consequences as women are.

So, while I am grateful for my make-up each day as I apply it, I also feel a tinge of remorse, regret, guilt? I'm not sure what it is, but part of me knows I'm doing something that doesn't quite align with my own sense of something. Part of me feels like a phony.

I'm Still Minding the Fucking Gap

Wage inequality has just increased, according to a recent article by Forbes. They report the findings of The Institute for women's Policy Research, which tell us that

Controlling for inflation, women’s earnings increased by 0.9 percent, while men’s earnings increased by 2.6 percent since 2014.

When I was in college, my sociology teacher told us that one reason for this was that women don't usually negotiate their salaries. Well, I'd be damned if that was going to be me! Fast forward a decade or so and you'd find me ankle deep in confusing stacks of full-time, tenure-track teaching new-hire paperwork. I was already intimidated. In the teaching world, there is a chart: X degree + X number years experience = X salary. My professor had mentioned this too as one of the reasons women don't think they can, and therefore don't, negotiate.

Despite ALL of this, I thought I should check and be sure. I asked a fellow teacher at a different college and was told that some unions allow and some don't allow negotiation. I asked my union representative via email if I was allowed to negotiate for my salary. His response was not a simple "yes" or "no," but (are you ready for this...sitting down?) "Why would you negotiate?" Emails were exchanged where I tried to state my case for earning more (moving to a much more expensive area, beating over 200 other candidates, publications... "None of these," my union representative said, "would be convincing to the administration." I was defeated. If I couldn't even get the support of my union, I wasn't about to try with my new employer.

When I sat down to sign my formal contract next to my salary it said "or as negotiated." I could have cried right there in the office. Instead, I signed and have held a resentment for that dope of a union rep. ever since.

BUT, I want this to be INSTRUCTIVE for others who have yet to negotiate at that first "real job" or any job. Here's what I learned:

1) You don't have to ask if you can negotiate. JUST NEGOTIATE. It's always negotiable.
2) Ask someone for help with negotiating. My husband had negotiated his salary several times, but not once did I ask his advice. I thought I had to do it all on my own. BIG mistake!
3) It ain't over until you sign that contract. I could have told the HR person that I actually wanted to speak to X about my salary. I didn't have to sign it right then.
4) Believe in what you're worth. Then, ask for it. Men do, and that's part of why they get more money than us.

Insurgents, what advice would you give a young woman about to negotiate her salary for the first time?

P.S. I forgot to put in my original posting that taking my own advice above, I successfully negotiated my salary at my next job!

P.P.S. Here is a helpful article for current job-seekers/ interviewers: "Get the Salary You Deserve: 4 Steps to Figuring out What You're Really Worth."

And another one on Equal Pay Day (and why we still need it)

The Way Back

To be honest, never thought I'd write on this blog again, but life keeps surprising me in wonderful, and sometimes cruel, ways. My counterpart, Amber, is unable to join me at the moment, but I find myself able and needing to write. So, welcome, once again, to Insurgents' Ink. As life has changed drastically for me, some of the content too may change but you can always count on a feminist lens of everything. I will start off, though, with something strictly political...