Monday, August 3, 2009

When abnormal becomes the new normal

Recently, a good friend of mine got mono. Whenever I'd read his status updates on Twitter or Facebook, I'd find myself slightly surprised at how limitations and symptoms that were new and foreign to him were completely typical for me. Can't go to work? Can't do errands? One activity in a day is too much? Trouble concentrating? His health was radically altered to resemble mine for a few weeks. It reminded me just how much I've had to adapt my lifestyle to my limitations. Dealing daily with abnormal health has become normal for me.

It's not easy to understand chronic illness if you haven't lived it. I'm always happy to find some kind of analogy for my daily struggles with dysautonomia in order to improve understanding and awareness. This dysfunction of my autonomic nervous system affects almost every system of my body. Symptoms range widely in type and severity from day to day or even hour to hour. I can be doing ok one minute and flat on my back the next - quite literally. Describing these symptoms and feelings to another (healthy) person is just short of impossible, so sometimes I don't even try. However, it can be helpful to use an analogy every so often, just to keep those around me in tune with what I cope with on a regular basis.

Tonight, I briefly visited the online support forum for my condition. One member made me smile knowingly when she posted that adaptation and adjustment to her limitations had left her forgetting what it felt like to be "normal." She said that seeing people standing in 90-degree heat at a BBQ left her marveling: "What if they get overheated? How can they stand so long? How can they talk and not be short of breath?" I share this sense of wonder when I see average people completing normal, everyday tasks with ease. I sometimes question how a person can have enough energy to get through a full day of work without immediately crash landing on the couch. For me, watching the average person function is akin to seeing a superhero leap tall buildings in a single bound. If I think back, I know that at one time I was healthy enough to do it all, but it's as if I'm remembering a dream, not real life.

Standing is incredibly difficult for me because my blood pressure slowly drops the longer I'm upright. (To a lesser extent, this also happens with sitting upright.) Unless I shift my weight around, walk, or do something else to circulate my blood, my brain gradually runs out of oxygen the longer I remain standing still. I used to have no analogy for this kind of feeling, other than a fogginess in my mind and a feeling of urgency to move or lie down. I mean, even though my brain is slowly being deprived of oxygen, I still look entirely normal on the outside. What do people think when I start to have trouble following their conversation or finding words? Do I look thoughtless when I ask a question they just answered 5 minutes ago? Do I appear stupid when I have to think hard about simple responses? Does it seem odd that I can walk over to greet someone but shift away uneasily while we converse? All these questions go through my mind.

Standing for me is similar to lifting a heavy weight above your head. At first, you can hold the weight up without much of a problem. Sure, it's heavy, but it's possible. Then your arms begin to shake as your muscles fatigue. Soon, you can feel your body crying out to put this weight down. As you power through every message your body is sending you to STOP, you eventually find that you cannot will yourself to go on any longer. Your arms suddenly reach the breaking point and collapse under the weight that at first was manageable. It's the same way standing feels to a person with dysautonomia. The initial stance may be manageable, but the longer I stand, the more urgently my body signals me to sit, sit, sit! If I ignore these signals for too long, I can eventually collapse.

Another problem that I deal with regularly is severe fatigue (usually with muscle aches). Saying these words makes it sound like a nice nap or a day in bed will have me back up in no time. However, my invisible illness is not cured by sleep, and in fact, my fatigue is often at its worst during the hours after I wake up! I have had a hard time describing this type of exhaustion to the average person. There is just nothing like it when you are young and healthy with endless energy. The closest description that matches this feeling is when you have the flu. The flu makes every single muscle in your body ache, and moving feels like you are fighting through molasses. People who have had the flu or even mono can understand this feeling. When this crushing exhaustion is unrelenting for months and years, it is not possible to maintain a normal life. Imagine how having the flu disrupts normal life for a week or two. Now think about what it would be like to have the flu all the time. It's important to remind others that even though I look normal, I'm actually putting forth 3 times the typical amount of effort to get through a particular activity, and afterward, I "pay" for an event with worsening symptoms for days after it's over.

I've been thinking carefully about these analogies for some time, and I'm writing about them not to get sympathy, but to spread awareness of what it's physically like to live in a body limited by chronic illness. Each person with chronic illness probably has a particular symptom that disables them more than others, and some are more severely disabled than others, but the result is the same - trying to operate as normally as possible while feeling very far from normal.

Next time you meet someone who seems confused, distracted, or has trouble following your conversation... next time someone tells you they are just too exhausted to make it out... next time you meet someone with a chronic illness, remember that though they may appear normal, it's quite possible they are fighting through physical suffering greater than you could ever imagine.

"Be kinder than necessary because everyone you meet is fighting some kind of battle."

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