Blog — The Patient Advocate's Chronicle

Because if you have an autoimmune or chronic condition, the likelihood is that I have been where you are.

When you were diagnosed, were you scared? Bewildered? Confused? Angry? Numb? Did you feel helpless or stupid? I was too young to understand completely, but I remember clearly how angry I was. Very angry. Furious. I didn't know then that it was a defense to cover helplessness. It was so big. DIABETES (it always seemed weird that it's never capitalized in print). I didn't know what it was, how it worked, or what it meant for the rest of my life. Everything was changing. I thought, what do I do now?

There was other stuff, too -- subconscious stuff. I didn't realize it until recently, but I also felt a deep sense of betrayal. It makes sense. What's worse than when you betray yourself? And what else can you call it when your body turns on you and literally attacks itself? You are supposed to be able to trust yourself more than anyone else on the planet, right? But you can't. Nothing works like it's supposed to anymore.

My situation was made even worse by the fact that I thought I had already paid my medical "dues." You know those commercials for the meningitis vaccine? I had that. Eight years before my diabetes diagnosis, I got B strep meningitis. I was the only kid who survived it that year, and even then I ended up in a wheelchair for 18 months. It was only through my family's support and sacrifices that I won that vicious, ugly war.

It was a real slap in the face to realize that wasn’t the end of it, that instead of winning a war, it had just been the opening salvo, a mere battle in a conflict that would last the length of my life.

Decades later, it makes me sad sometimes to think about who I might have been if I had been healthy. Then I think about how far I've come. Yes, my conditions (I have several now) are hard. Inconvenient. Time-consuming. But I like the life I have and the person I have become. I am proud of the strength that came from the crucible of my medical issues. I am grateful for the relationships I have, every one of which is worthwhile and valuable (you tend not to waste time on superficiality when your time and energy are limited). And maybe, just maybe, I have learned enough to trust myself again.

So, why this blog? I want to use my experience and contacts to arm you with the tools you will need to navigate both your condition and our ridiculously complicated healthcare system. I figure that if I can help just one person avoid my mistakes or come through the low points better than I did, I can consider this a successful venture.

Most of the people reading this blog have conditions that are invisible. If I had a nickel every time I heard, “you don’t look sick,” I wouldn’t be driving a teenage Honda. I am always pleased to hear it, as it is a testimony to my good control, at least most of the time.

But, no matter how “normal” I look to others, the fact is that I have a lot more mandatory work to do to live every day than the average human being. For example, I can’t just skip a meal when I’m not hungry. I have to either alter my insulin or make adjustments so my body doesn’t get mad at me (yes, sometimes I think of my physical self as a separate entity with its own agenda, especially when I have blood drawn and my veins run away, like they’re playing hide and seek). This might not matter most days, but when it does, it REALLY does.

How do you explain to a boss that no, you don’t have a fever, and yes, you are probably functional enough to work from home, but you can’t come into work today because you have to deal with the side effects of your condition? I do not like to be around people if I just can’t get my blood sugar down. It’s a very vulnerable place to be. I feel like crap and I am scared because I can’t figure out what’s going on. Also, I like the people I work with, but not enough to let them into that particular corner of my life. If nothing else, it would totally undermine their view of me as a competent co-worker.

Or how do you handle the looks you get if you park in a handicapped parking space, but you don’t look handicapped? The world has a lot of righteous judgment for people they’ve never met.

Then there are the times, especially if you are seeing a provider who doesn’t know you well, when you feel like you have to justify the reason for your visit. I remember going to see my GP—who does know me well—for a sore throat that had lasted upwards of three weeks before I went to see him. I’d been checking my temperature and it didn’t seem like I had much of one, especially since I tend to run about a point lower than average, so 98.6 is actually high, more like 99.6. When he checked my throat, I told him I wished I’d come earlier in the day because it didn’t hurt in the afternoons as much as it did in the mornings, and I assumed the inflammation would be more visible. He told me I didn’t have to justify myself, that he believed that I had what I said I did. I think I almost cried, which is not something I do publicly. Ever.

I have always coped by leading with my chin—thick skin, don’t care what others think, defensiveness as an end in itself. This is not a position I would recommend. It can be very isolating. To give you an idea, the people who are closest to me aren’t there because I invited them in; they are there because they thought I was worth the effort of pushing past that rough exterior. They have stuck with me through a lot, and I will never be able to express how grateful I am for their friendship.

I think... I think that the healthiest way to cope is to accept that everyone has their own version of normal. You can share as much or as little as you are comfortable with. But without your health, you have nothing. Don’t push yourself so hard that it affects your condition. Accept help from the people who love you. Teach them how. They are your safety net. And know that there are going to be days when you have to put yourself first. This is not something to be ashamed of, it just is.

How did Henry David Thoreau put it? “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms...”[1]

It’s hard to hear, but our lives are limited. Do what you need to do to get as much as you can out of what you have.

[1] http://www.goodreads.com/quotes/2690-i-went-to-the-woods-because-i-wished-to-live