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When You Think You Understand Your Illness, Then It Throws You Another Curveball

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It’s funny, after so many years of being sick I always think I know what I’m doing. I know how to handle my bad days and I know how far to push myself on the good days. I’ve worked out a nice little summary of my life for the curious people I meet and I’ve learned how to talk to my family. I’ve found the coping strategies that help me. I’ve learned what I should avoid. Learned when and how to ask for help and who I can depend on and those who will not be able to understand. I felt pretty adept at handling my conditions until just a few nights ago. I found myself in a totally new situation and had no idea how to handle it. I was reminded that whatever is wrong with my body is still a learning process and just when I think I understand, I’m thrown another curveball.

I was eating dinner with my mom at a Cracker Barrel. They had Wood Wick candles on sale and I wanted to take advantage of it. (I have somewhat of an addiction to their candles.) I’ve been having digestive issues and have lost nearly 20 pounds in the past month. I haven’t gotten a diagnosis and honestly have not had any testing done despite my trips to the emergency room for dehydration and countless visits to my PCP. Although that rant is for another time. I have found that I can only eat a few bites of food at a time before I feel full and if I push it, I just end up vomiting the whole meal. So I ordered a kid’s meal and when it came to the table, just as I ordered, I could only eat a few bites and then pushed the plate away to wait for my mom to finish her meal and ask for a box. When the waitress came back she noticed that I wasn’t eating. She seemed almost personally offended and asked what was wrong with my meal. For the first time in a while I was speechless. Not because the question was so out of the ordinary, but because I had no practice with this question. Do I tell her why I can’t eat? Do I smile and say, “Nothing is wrong, could I have a to-go box?” If I tell her it’s because of my unruly digestive system, how much detail is appropriate? What can I say to make her feel better? Why am I so worried about her feelings? Have I insulted her by not eating?

All of these questions went through my head like bullets while I just stared at the waitress for a few seconds trying to find the words. Eventually, seeing my distress, my mom spoke up for me and answered, “Nothing is wrong, it’s all her.” For the rest of the time we sat there I noticed the once-friendly waitress never made eye contact with us again. For some reason this made me feel guilty, as though I had caused her to feel self-conscious about her waitressing skills (which were fine, by the way). I still don’t exactly know how I will answer a question like that in the future. I don’t have a tidy word to describe what is going on. I don’t know what is causing my body to starve itself. I am back in the learning phase.

Thankfully, I am not starting from scratch. I have experience with advocating for myself now and will continue to fight for answers despite being shrugged off and dismissed. I have met some wonderful people in the chronic pain and illness community who are incredibly supportive and understanding and are happy to be sounding boards for me. My family has learned how best to support me when I’m feeling poorly and no longer push me to “overcome” my symptoms and live at the same pace as a healthy person. So although I feel just as dumbfounded as the first time I saw a doctor who diagnosed me with a chronic condition, when I step back and look at the whole picture, I’ve come a long way. I just need to learn how to best cope with this particular hurdle.

Originally published: October 7, 2016
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