(This is the second part of a series of articles about living with a chronic illness, find the first article What the Hell is a Spoonie? Here.)
Okay so here’s how it goes-
Picture this-
It was nighttime. I wake up in my bed around midnight, I feel like I may need to use the bathroom. I get up and walk down the hallway, my intestines begin to start cramping, I became lightheaded and my vision blurs, nausea hits me like a truck, I fall onto my knees to avoid throwing up or passing out and crawl to my parents’ bedroom door and knock on it for help, my mom comes out and tries to comfort me. I begin to dry heave, it's as if I have started to lose control of my body. My Mom, who is becoming lightheaded herself because of the anxiety that is caused by seeing her daughter practically convulsing on the ground, calls for my Dad so she can compose herself. My dad helps me downstairs where I lay on the ground with an old blanket and a pillow under my head, my body shaking with tremors. He gets me a glass of water. I ask him to turn on the TV as a distraction, the symptoms gradually fade. He goes back upstairs, I fall asleep. Roughly a half hour later, it happens again. I wake up, dizzy and nauseous, this time I crawl up the bottom half of the stairs like a goddamn zombie from a horror movie, and my Mom comes down to help, I start dry heaving again and she holds a trashcan under me in case I throw up, more tremors, etc. etc. Eventually the feeling fades. I wake up the next morning physically exhausted from the previous night’s “episode”.
It’s a good story, the shaking convulsively part always freaks people out. That night was probably the worst acute flare up I ever had. (I had also dropped 15 pounds in about 2 weeks from a long term flare up that caused me to be extremely nauseous for an extended period of time.) I could go on for a while with these illness stories, sometimes telling these stories I remind myself of the chocolate guy scammer from Spongebob.
"I was born with glass bones and paper skin. Every morning I break my legs, and every afternoon I break my arms. At night I lie awake in agony until the heart attacks put me to sleep."
Stories like that bring out a lot of "Oh my God, are you okay?" and "That must be so awful!" from people. That’s because it’s easy for others to understand physical pain; mental pain, not so much.
The mental distress caused by my chronic illness has been far more of a burden than any physical pain or discomfort I've endured. What those story doesn't tell you is how flare ups like the ones mentioned above have caused me intense anxiety caused by the fear I will have one again. They don’t tell you about the fact that I'm on Prozac because of it or that I sometimes do weird things like not eat the parts of food that my hands touch for fear of additional illness. Stories like those don't give details about the large portion of high school I missed because I was home sick, and how because of that it was difficult for me to make friends and caused me to be extremely lonely.
Stories like those don't tell you about how I went to homecoming alone sophomore year, no friends or anything, optimistic that I'd see people I'd know there and have fun, only to start feeling ill and have to wait outside in the rain, cold an alone, for my Mom to pick me up.
I'm not telling you this because I want a pity party.
I'm telling you this for two reasons:
If you're a spoonie too, I want you to know that you're not alone in having anxiety or other forms of mental illness hitch hike onto your chronic illness. Its totally common, there's a large community of people going through what you are.
If you're not a spoonie, I want you to know that if you encounter someone with a chronic illness, be aware that there's more to the puzzle than just physical pain. They can't just take an advil and make it all go away. One of the best things you can do for a spoonie is offer your company.
One of the kindest things I can ever remember someone doing for me in regards to my chronic illness was when I first developed my illness and was very very very sick, and very scared, since at that point I had not been diagnosed yet.
Two of my friends would stop by, at least one of them every day, to check in on me and just hang out, either draw or watch TV, just simple things like that. We were still kids, around 12 years old, all our other friends were outside running around having fun, swimming, enjoying the summer, and they decided to take time out of their summers to help me feel a little less lonely and scared.
And that’s the best thing you can do. Don’t offer drugs or doctor’s numbers or miracle cures, simply offer your company and your ear. Listen to them, let them get out their feelings, make them feel like a friend, like a normal person. I guarantee, you will positively impact their life more than you ever thought possible.
