What you don’t see when you look at my pictures, is the reality of chronic illness. After having a conversation with another parent last week about girls at our high school that think my teen isn’t really sick, I think this is an important topic to address? Why? Homecoming is an excellent example. Here’s my teen last weekend.
What you see is a gorgeous teenager with great friends out for a night on the town.
Let me tell you what you don’t see.
The day before, my daughter couldn’t get out of bed. Not only did she have a migraine, she had a POTS flare and everything in her body hurt. After numerous rounds of medications and lots of fluids, she was finally able to pull herself out of bed, throw on a t-shirt and eat something. It was short-lived. Once again Saturday morning, the same thing happened except this time she was vomiting too. Yet, she was able to pull herself out of bed later that day to get ready for homecoming with friends.
What you don’t see is that it took almost every ounce of energy she had to help her friends with their hair and when she started on hers, she had to call me for help. By the time she was ready to go, she was already exhausted. She had used up all her spoons. But, she put a smile on her face and walked out the door. She made it through pictures and dinner and then had to come home. She never made it to homecoming.
Often when you look at my pictures (or hers), you don’t see what chronic illness is really like because we don’t show you. We don’t take pictures of the days when she’s exhausted, in pain or spitting up blood. We don’t post pics of migraine days, brain fog or vomit. While we have shared some IV and procedure pics over the years, we don’t record the day-to-day struggle. So when you see pictures of my teen looking “healthy,” it’s usually a good moment and sometimes it’s not.
I hate to hear that other kids think my daughter is faking being sick because it’s quite the opposite. When they see her at school or dance, what they don’t see is that’s when she’s faking. Many times she is pretending to feel well. It’s taking all of her energy and composure to hold it together long enough to make it through. They also don’t see that one great day full of activity may put her back in bed for a couple. It may trigger her migraines or POTS. It’s a vicious cycle.
What they also don’t see is how lucky they are. They get to go to school and dance. They get to live a normal teenage life. So maybe, instead of focusing their energy on my teen, they should be grateful instead.