Chronic Illness and Going Out
It is true, the healthy don’t understand what it means to have a chronic illness. I used to get upset when my friends would say, “Hey, I’m coming in to town, want to meet for dinner?” Or, “We aren’t going to be out long, we’ll just be sitting there, you can do that right?” I wasn’t upset in an angry way, I just felt misunderstood and invisible. Dismissed. Isolated. Alone.
You really have no clue what I’m going through, do you?
When I was healthy, I didn’t think twice about how much energy it takes to do the seemingly simple activities of daily life. With autonomic dysfunction, getting out of bed is a task. When I stand, I feel like the floor is pulling me down (as if I could get any lower). I feel the immediate need to lay back down. If I don’t, if I push through and try to walk downstairs, I get short of breath and lightheaded. My blood pressure drops because the nerves that are working to move the blood from my lower body up to the heart aren’t functioning properly. The blood pools in my legs and lower abdomen which reduces the amount of blood that can feed oxygen to the heart and brain. The body tries to make up for this loss of blood volume and tells the heart to beat faster. My heart rate is as high as a healthy person’s when they work out. And that’s just standing.
The shower. The bane of my existence with autonomic dysfunction. Even in healthy people, hot water dilates the veins and can drop the blood pressure. For those with autonomic dysfunction, we come to the shower already with low blood pressure (from standing). The hot water itself causes lightheadedness and fatigue. On top of that, lifting my arms above my head to shampoo my hair can be disastrous. When I lift my arms, gravity takes over and the blood rushes down into the lower half of my body, pooling, and again seemingly lowering the blood volume to the heart and brain. My blood pressure drops more and my heart rate increases. Autonomic dysfunction can also make it difficult to regulate your body temperature as the nerves that regulate the sweat glands don’t function properly. Hot water in the shower causes redness, lightheadedness, and a general discomfort.
If I survive the death trap that is the shower, I feel like I just ran a marathon. But, then there is getting dressed. Gone are the days of standing in front of my closet wondering what to wear. At this point I usually just throw on the easiest outfit to put on or whatever is in front of me. Makeup. Drying my hair (again with the arms above my head thing).
Now I’m ready. Ready to be presentable in the world and I’m tired. And it’s not a normal tired. It is fatigue. That feeling that you really can’t put one foot in front of the other. But you do because you want to be normal. You want to participate in that thing called life that has been passing you by for years.
So I make it to the car where I can finally sit down. And I tear up because I’m thinking there is no way I can do this. There is no way I can go and be that happy, lighthearted, spontaneous person I used to be. I’m in pain, short of breath. Moving my arms to turn the steering wheel is a work out.
When I pull up to the restaurant to meet my friends, I have to sit a minute and gather my thoughts. I try to stuff down the fatigue and put on a smile. Think happy thoughts. I get out of the car and immediately my blood pressure drops and my heart rate increases. I walk inside and by this point I’m working hard to catch my breath. I see my friends at the back table and wave as I make my way there. Hugs. I sit down.
“How are you, Sarah,” they ask.
“Good,” I lie.
“You look good. You don’t even look sick,” they say. They mean to be encouraging, but really it feels dismissive.
I sit through dinner adjusting my position every five minutes because it hurts to sit. I listen to my friends talk about their adventures, their dates, their kids. I feel inadequate because I have nothing fun to talk about. I’m getting more tired. They talk about their work and how much it sucks and wish they could do something else. I would give anything to be able to work. But I don’t say that, I just nod in agreement remembering the time when I was healthy and work was a chore not a privilege.
After dinner, they are going to get drinks and I can’t go because I’m tired. Sitting at a table for an hour is work for those with chronic illness. They try to convince me to come, promising they won’t stay long. And I have to remember that they don’t understand. Healthy young people don’t understand what it took to get to that dinner. They don’t understand that my payment for meeting them tonight is that I won’t be able to get out of bed tomorrow.
I don’t blame them for not understanding. How can anyone understand a circumstance that they have never experienced? I don’t blame them, but I feel alone. Driving home, changing clothes, laying down, forgetting to wash my face, but not even caring because I’m finally laying down. I’m back in the bed, and it feels heavenly. The only place I feel like I won’t pass out. Until I realize it really is a prison. The allure of feeling decent keeps me chained there. And I try to fall asleep so I can escape.