ChronicBabe Blog Carnival!!

Hey all you wonderful readers,

If you haven't had a chance, I suggest you check out the first officially-hosted-by-ChronicBabe.com ChronicBabe Carnival.

This carnival's theme was "I Can Bring Home the Bacon: Thoughts on Work and Chronic Illness."

These babes, (employed, unemployed, and in school) had some awesome things to say and you can find it if you click here.

Worried about work

One of my big worries is what I am going to do with my life once I finish university. I have the normal university student worries, about finding a job and being happy, but I am also worried about what my health will mean for work. Right now I only work a couple hours a week and then a summer job. Right now I am very lucky to be on my father's health insurance and to have my family cover my health care. But I don't know what the future holds.

Even if I find a job, I am worried about whether it will include enough insurance and enough money to afford my medication and health care. Right now, I take a minimum of three medications and one vitamin a day. And it is rare that I only take these. I have a lot of "as needed" medications as well. I need these to keep my migraines enough in control that I can get out of bed, turn on the light, go to classes, etc. I doubt I could hold down a job without my medications.

Even with all these medications, my migraines still impair my daily life. I am frequently unable to drive, often miss class, sometimes get basically stuck in bed for two or three days, etc. The trouble with driving may make it hard to get to jobs, but that's not my main worry. Why hire me when there are other people searching for jobs who probably wouldn't miss so much work? And who probably don't have as many days where their brains have trouble functioning? I work extra hard to make up for the time I "miss" because of my health, I'm smart, and I'm passionate, but I'm worried that is not what employers will see. And if I do get hired, would I be able to keep the job?

I have a still have a little while before I try to enter the full-time work world, but how that world and my health will interact is something that keeps me up at night.

Chronic Babe Carnival

The second Chronic Babe Carnival went up last week at Annie's blog. The question was about your favorite coping mechanisms, so there's a lot of really cool ideas. So if you haven't see it yet, this is my late suggestion that you check it you :)

You can find it by clicking here.

Studying disability: my coping skill

Over the last several years, I have picked up a lot of coping skills: amazing friends, meditation, ways of distracting myself, etc. But one of the new ways I am learning to cope with my chronic health problems is by studying the sociology of disability.

When I first started getting migraines, it never crossed my mind to think about them as a disability. But as I started looking for resources on how to cope, I started learning about disability. And the more I learned, the more I wanted to learn.

So how the hell is that a coping skill? Because it has changed how I feel about my pain and my life. There is a lot of prejudice and silence regarding disability and chronic illness. And, like most people in this society, I had internalized these things.

As I have been reading, I keep finding sentences that make me feel less alone. That described exactly what I have been going through. And I’m realizing something:

Society is full of disableism. And it affects me every day. The more I read, the more I can see it. The more I can understand the fabric of society, and the disableism and health-biases that are part of this fabric.

And as I understand that, I am gaining confidence. I am breaking the silence. I am envisioning the world and life I want to have, one with less disableism, and I am working towards it.

Now I’m not suggesting this is something that would work for everyone. I am a major sociology dork, and that is not everyone’s jam. But reading about disability and disableism has been incredibly empowering, and that makes it easier to navigate my migraine-filled life.

Chronic carnival

As most of you know, I am part of the Chronic Babe forum. A bunch of us decided to start a carnival, and fabulous Kathy has kindly hosted the first one. If you haven't already checked it out, I suggest clicking on this link right here :)

Time

Sometimes when people ask me what activities I do, I jokingly include my health as an activity. I either say, "I get sick a lot" or "and I have chronic health problems" or something like that. Often it's kind of awkward and I make a mental note to never say that again (until the next time of course). But here's the thing: being ill, or disabled, or whatever label you want to afix, takes a LOT of time.

I was socialized into a culture that tells me I need to work hard and constantly get ahead. (Someone asked me what my motto was last week, and my first response was "work hard." And then I couldn't think of a better one.) This sounds good in theory, but it can lead to problems, especially when you have health problems. I'm getting better about trying not to do everything I used to. I'm "active" in student activities at my university, but not nearly as active as I used to be. Or I feel I should be.

When I read amandaw's "Second Shift for the Sick Post" (which can be found here, and which I highly suggest reading), it was like a light bulb went off. I mean, I knew dealing with my health takes a lot of time, but being able to put it in feminist and sociological theory really helped.

Sometimes, usually when my health is going through a lower point, I get to the end of the day and wonder where the time went; I'm exhausted, in pain, and nothing in my planner has been finished -- yet I feel like I've been busy trying to be "productive" all day. I used to beat myself up on those days. And I won't lie, I still do. But I've gotten better, because now I realize that what I have been doing is my "second shift for the sick."

What am I spending my time doing? There's prescriptions to be filled, doctors to be contacted, insurance hoops to be jumped through, etc. There is also the time I need to spend on self-care: stretching, heating pads, eating at the right times, etc. And finally, my brain and body is spending a lot of time simply being ill--I need to be in bed, my brain too closed-down to be "productive," everything has to be dark, etc. And this all not only takes time, it takes energy.

When I really sit down and look at it, there's a lot going on. I'm not so lazy after all.