One week ago, I boarded a plane and headed home to dear ol’ Tennessee. It was a whirlwind trip filled with family time, traveling, wedding preparations, a rehearsal dinner, a wedding (Yay! Congrats P & L!), late nights, early mornings, and foods in which I don’t usually indulge. I had braced myself for a stress-induced flare of symptoms, but thankfully, my body was relatively cooperative! In fact, not only was I present and alert for all of the weekend festivities, I was even able to enjoy them! That’s big! Though I was able to enjoy, several really annoying symptoms followed me all weekend, the worst of which was that awful physical fatigue that feels like I’m about to collapse, even if I’m already sitting down.
As a general rule, my symptoms are worse in the afternoon. If you were to chart my day based on symptom severity, it would look something like a bell curve, with a significantly higher severity in the afternoon, while I mornings and especially evenings are less severe.
This pattern is significant. I know what times of the day I can manage to do more and what times I really should rest, and while there are obviously variations day-to-day and depending on what I’m doing (affecting adrenaline levels or not), this is pretty much the standard.
This pattern did not change because I left town. That meant that most mornings, I went to breakfast in a fog and did my best to follow the five conversations happening at once at the breakfast table. In the afternoons, I found myself looking for the nearest seat, desperately hoping that my legs would carry me until I found one. I monitored my heart rate like it was my job, and at one point, found myself in the groomsmen’s cabin with my feet elevated being fanned by my mother-in-law. Then, of course in the evenings when all the fun was happening, I felt relatively good and was able to socialize and behave like a normal, functioning human being.
I was glad that most of the fun things occurred in the evenings. That meant that I was able to partake and have fun and not be a total party-pooper! At the same time though, I was keenly aware that I had done little to help out with the wedding preparations, and had in fact been a bit of a burden to take care of in the middle of the day. I knew that to those who didn’t know me, I must’ve looked like an entitled brat or a drama queen…or a faker.
It is important to note that my in-laws—all of them—are wonderful, sweet people who see the best in others. They have been so supportive of me and Hubs, and they worked hard this weekend to make sure that I was included in the fun without overexerting myself. I know that they don’t think I’m faking this illness. But sometimes, that little lying voice in my head whispers “But Mandy, you don’t look sick. In fact, you look pretty dang hot in that dress and those shoes! (That part wasn’t a lie 😛 ) They must think you were being so dramatic this afternoon when you needed to lay down, but now what? You can suddenly dance? You can suddenly drink? They’ll all think you’re a fake.”
I could have listened to that little lying voice. I could have sat with Memaw while my husband and sisters and brothers-in-law danced. I could have sat in my seat instead of mingling to talk with loved ones I see so infrequently. I could have. It would have been easy. Maybe it even would have been smart, just so no one got any funny ideas about me only being sick when it was convenient. But I wanted to dance. I wanted to celebrate! I wanted to have fun, because it’s honestly something that doesn’t happen much anymore.
So I did! I may have earned myself the nickname “Fireball” for the flailing about attempt at a cha-cha I did with Hubs to the Pitbull song by the same name. I took a funny hat from the photo booth and rocked it for a few songs. I let myself relax and have a good time, and I chose not to believe that little lying voice.
So here’s the thing. I know that many in the chronic illness community, myself included, have shied away from sharing happy memories and fun photos online for fear of the backlash from others who don’t understand your situation. Maybe, like me, you’ve even been tempted to skip out on fun altogether.
That fear is valid. I have felt it. I understand you. But we have to let it go.
Even if someone were to make a comment (Though in my case, this is simply an irrational fear backed up by absolutely nothing. Not one person has suggested I’m making this up.)…so? Just because we are sick does not mean that we aren’t ever permitted to have fun. Just because you feel relatively good today doesn’t invalidate the fact that you felt like crap yesterday. Just because people don’t understand what you’re going through doesn’t mean you have to live within the confines of what they deem acceptable for a sick person.
Worst case scenario: Someone calls you out for not looking/acting sick. Use the opportunity to educate them about your illness and the roller coaster ride of symptoms you’re on 24/7. That’s the best thing you can do. Education and awareness are powerful tools that lead to understanding and compassion and empathy, things this world desperately needs more of.
Best case scenario: You have a super fun time doing something you love and share it online and have happy memories to reflect on the next time you’re in a flare!
So kick that little lying voice to the curb! If you feel well enough to dance, dance! If you feel well enough to go get coffee, go get coffee! If you don’t feel well at all, don’t feel guilty about needing extra assistance! Life is too short to sit around fretting over how others perceive you.
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