This month, I am working on the 30 Day Chronic Illness Challenge. It was something I found on Tumblr that was created by @cfs_zombie. Each day has a different writing prompt that focuses on the topic of chronic illness. So far, I have found every topic to be interesting and thought provoking.
Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?
This is a more difficult topic to write about than I expected it to be. It’s almost the type of question that arises when fiction writers have one of their characters go back in time to speak with their younger self. What would I say to the “me” of the past? What did the the “me” of the past need to hear, and when would be the best time for her to hear it?
I’ll start with “Childhood Me”. She was getting horrible stomach cramps after drinking milk, sneezing a whole lot, and noticing strange, red, bumps on her wrists after she ate strawberries. Childhood Me was cognizant enough to realize that these symptoms were not normal, and she tried to get the adults around her to understand that. Childhood Me got told she was faking those symptoms, and that she didn’t have allergies.
What would I say to her? What would she need to hear?
“You’re right,” I would say to Childhood Me, “Those are allergy symptoms. Don’t listen to the adults who think you are faking being sick. You are sick. You are going to have to learn how to pay attention to what your body is trying to tell you. That’s your guide to help you avoid the things that make you sick.”
Of course, I would have had to give Childhood Me this advice when she was about five or six years old. By the time she was seven, she had already figured out that she was more responsible and mature than the adults in her life and that she would have to learn how take care of herself.
What about “Teenage Me”? She was still experiencing stomach cramps and other digestion issues from milk. She suspected other foods caused her problems too, but had no idea which ones. She was passing out, experiencing extreme fatigue, and suffering with migraine headaches. She lost her hearing for about a year. Oh, and her parents were still insisting that she was faking her symptoms and was “lazy”.
What would Teenage Me need to hear? What advice could have helped her?
“Get a journal, and start collecting data”, I would tell Teenage Me. I would tell her to write down all of the food she eats, when she ate it, and how she felt afterwards. “Write down all the symptoms, no matter how embarrassing they may be.”
I’d advise her to make a note of when each of her periods started, when they stopped, how heavy they were, and when each dizzy spell occurred. I’d tell her to start listing the allergy medications that she tried, to write down what symptoms they seemed to help with, and when she took them.
“You know you aren’t faking being sick, and you know you aren’t lazy”, I’d tell Teenage Me. “The data you gather will prove it. Show it to a doctor as soon as you get the opportunity to do so. Let the doctor use it to figure out how to help you feel better”.
It wasn’t until I became an adult that I began to really consider the advice that the “Me of Today” would have given to the “Me of the Past”. It didn’t happen all at once. I did start going to doctors (when I had health insurance coverage). I found alternative forms of treatment that actually work very well for me.
At the same time, I spent years in complete denial about my gluten intolerance. It was scary to consider that an entire food group would be taken from my diet, after all of the foods that were already “gone” due to other allergies. It was difficult enough to find foods that were safe without removing, like, the majority of the grocery store along with them.
And I still have a tendency to push myself farther than I should at times. The stubborn streak remains. I’m getting better at reining it in now that I’m much more aware of the physical consequences that will come from certain choices.
Overall, what I’ve learned from writing this blog is that coping with chronic illnesses is a process. It’s hard to figure out what to do when you haven’t gotten a diagnosis, or before the doctors/specialists figure out all the things that are wrong with you.
It’s hard to deal with people who think you are faking being sick or who demand you push through things that you really should step away from. It sucks to have to take a nap, or cancel plans, when your symptoms are severe or you are completely exhausted.
There is nothing easy about this. Perhaps the most honest thing I could say to “Past Me” would be this: “You won’t get better. Things will always be hard. But there will be some good days, too.”