To tell or not to tell, that is the question

I’ve been grappling with this question for years. How much should I tell my boss about my medical condition? On the one hand, I want them to understand some of the odd things that I do. Why I am so neurotic about prepping my classes (I must over prep, so I can still get through a class when my headache is so bad I can scarcely recall my own name), why I sometimes seem so withdrawn and antisocial (having taken my meds, I am saving what little energy I have for my classroom interactions later in the day), why I might be on edge or overly sensitive at times (wouldn’t you be if you’d had a headache for weeks on end with no relief?!), why I keep the lights off in my office, why working through lunch is not an option, why I need structure, why last minute surprises are so unwelcome… I know that it would probably help if my boss and coworkers understood why I do all of these things, but then, they could never REALLY understand (even my husband can’t really understand)… and armed with this information, would they be prejudiced against me in a new way? Instead of just thinking I’m moody, would they begin to see me as a liability? Would telling them bring new understanding that would dramatically improve my work situation? Or would things just get worse? Will they see this as a weakness that justifies skipping over me for promotions and tough assignments (rather than working with me to make the conditions right for my success)? The problem is, I can’t know for sure. I won’t know how they will react until I actually sit down and tell them all of the details of my condition. And since it is a condition that doesn’t show up on x-rays or in blood tests, I’ll just have to hope that they are open to my doctor’s diagnosis and don’t think it is just all in my head.

Interested to hear how others have dealt with this problem.

Here are some articles on the subject:

http://voices.yahoo.com/chronic-health-conditions-tell-employer-5443439.html

http://www.nytimes.com/2009/06/20/health/20patient.html?_r=0

Evidently there are lots of people out there dealing with this issue.

Sadly…

Headache

Headache (Photo credit: Lel4nd)

I had been lucky for a while. With physical therapy I’d seen my pain decrease.  In November I recorded nine noteworthy attacks. In December it was down to five. In January I topped out at three, and I was over the moon! I was beginning to get my life back. Even the slight increase to five in February didn’t alarm me. I was seeing patterns, and I was beginning to plan how I could make my life work around my pain. However, in the United States medical care doesn’t come cheaply. You need time and money to pursue the kind of cure I was after, so in March I didn’t have physical therapy.  I continued my exercises at home (as well as I could), my stretching, my Tai Chi. I used a tennis ball behind my back while driving to give myself automessage.  I drank lots of water, and I was conscious of my posture, but it didn’t matter. In March I recorded ten days of noteworthy pain.  And now, the first day of April, I sit here, fighting the fog that comes with the pain, trying to think, trying to write, trying to voice my frustration with the system.

You see, I work! I work a fulltime job specifically to make sure I have health insurance to help with medical expenses; nonetheless, even with the health insurance, there are costs. Oh, but the costs are worth it, right? Well, let’s think this through. I work to get health insurance, but my employer doesn’t cover the full cost of the insurance. I still have a portion of the premium deducted from each paycheck.  Then, when I do get a treatment, I have to pay deductibles, copays, and other expenses. What does that mean? Well, it means that I am spending more than a third of what I earn just on physical therapy alone! Which makes me start thinking, would I need physical therapy as much if I didn’t work? Or if I worked part-time instead of full-time? Maybe not.  Does that mean  I should give up my job and try to rearrange my life to minimize my pain in ways that don’t involve expensive medications and treatments? That would mean basically organizing my whole life around my condition. It just doesn’t seem right. I’m working so hard, and I still cannot really afford the care that I need to make me the most productive person I could be. It is so frustrating.

Saying hello to the holidays…

The holidays are here and that is enough to make a normal person have a headache, so I am trying to make a plan of action to allow me to enjoy the holidays with as little pain as possible. That is going to take some discipline on my part and some understanding on the part of the people around me.

First, I’ve noticed that varying my sleeping and eating habits can bring on a headache. This can be a big problem during the holidays because the normal routine flies out the window.  I suddenly find myself staying up later, waking up later, eating at odd times, and even what I am eating changes.  Sure, I can forgo the late night game of scrabble, but will I be able to fall asleep while the rest of the family is playing in the next room? And how do I explain that I am not just being difficult when I insist on eating a small lunch at 12 when we are planning to have a huge meal at 2? Oh, and then there is the issue of what I’m eating. It is so easy to offend or hurt people’s feelings if you don’t eat what is offered to you.

So, how am I going to deal with this? I plan to spend the next few weeks trying to prepare myself. If you have any suggestions, they are welcome!

http://scopeblog.stanford.edu/2011/11/managing-headache-disorders-during-the-holidays/

Today…

Drawing "THE CLUSTER HEADACHE" Subti...

Image via Wikipedia

So today is one of those days when I’m tempted to log into facebook and proclaim to the world that I have a headache.  I don’t know why people feel that they need to alert all of their facebook friends when they have a headache! You don’t see people posting about other physical ailments! But I often see people posting about headaches.  I wonder why that is?

Well, since I do have a headache today, I’ll have to wait and ponder that one another day.  For now I just thought I would say that I have decided that part of my new attempt to not let the pain define me, is my decision to stop posting about my headaches on facebook.  I will write about them here, and the people who are interested in knowing how I’m doing in my battle against them can come here to see how I’m doing, but the world at large, well, I’ll let them off the hook.

Right now, how I am doing is not so great.  I knew it was coming.  All day yesterday I was having visual auras. I took my meds and hoped that I would be able to skirt past the beast, but when I woke this morning with a drooping eye, I knew my efforts had been in vain.

What now? Well, I will retreat from the world and hope that I can find relief. Oh, and I need to remember to log my headache in so I have info to give my doctor.  I’m using an app that I found:

http://www.iheadacheapp.com/

Do you have any other apps or tools that you use to track your headaches?

You are not alone!

I think one of the most important things for people suffering from migraines is the knowledge that you are not alone and it isn’t “all in your head”.  I think it is helpful for us to build communities for ourselves, communities of people who share our suffering, people who understand.  If we have an outlet where we can cry, scream, shake the bars of our cage and share escape plans, maybe it will make it easier for us to interact normally with people in our daily lives who do not share our pain?

So, in the interest of building such a community, here is a blog that shares my vision:

http://www.thedailyheadache.com/