You don’t LOOK sick?

Question for the day: Why do we say this, “You don’t look sick,” as if we have to look a certain way to be deemed “sick.” And what does it mean to be “sick?” To one person, it could mean a momentary illness, a cold, virus, or infection. To another, it could be lifelong daily maintenance, caution, awareness, and appointments. And then there are the people that claim they NEVER GET SICK, good golly, at some point you have had to blow your nose or cough – just be real. (sense my sarcasm)

The dictionary’s definition of sick is this: “affected by physical or mental illness.”

I agree with this definition as a general statement. As the definition points to physical or mental illness, we should also be very much aware that most of these illnesses don’t go away, they come and stay, and sometimes bring additional illnesses with them. And when these are not temporary, those of us that suffer from daily illness learn what works for us to live and move.

I’m not much for how things look, but I can’t tell you how much this phrase gets under my skin. First of all, I absolutely hate (I don’t use the word hate flippantly) when this phrase is said to a child. If we are to teach a child as they grow, to care for their body, then they deserve to be heard. Second, I don’t like this phrase because I know the feeling of my body crawling from the inside out, or the pain that is making my head feel as if it might just blow at any moment, or the excruciating pain in my back that nothing can touch until a kidney stone starts to move, or the feeling of gasping for breath and everything spinning, but in all these situations not wanting to scare anyone, so I just say, “I’ve got to go to the bathroom.” or “I’m ok I’ll just sit right here for a little bit.” or sometimes say nothing at all. And I am here to tell you, I AIN’T DOING THAT ANYMORE! I am here today to give a voice to all who “don’t look sick” everyday, but bottomline reality, we are sick/ill/whatever you prefer to call it, everyday. One day we may be feeling good. The next could be a doozy. I’ve had 34+ years of these days. I began my life with diagnoses of Asthma and GERD. Today at 34 years old, I have specialist in pulmonary, gastroenterology, neurology, hematology, urology, dermatology(with expertise in bleeding disorders), OB/GYN(who found my bleeding disorders), ophthalmology, psychiatry, and dentist(with expertise in bleeding disorders). And they all my diagnoses effect the others. Example: I still have my wisdom teeth, because they are not causing problems, but also because if I were to have surgery of any kind, my bleeding disorders would require me be admitted to the hospital for me start receiving platelets at least 24 hours prior to any major surgery.

I thank God everyday that I cannot remember a single day without daily chronic medical maintenance. For years my parents and grandparents carried my nebulizer wherever we went! I was on 6+ treatments a day, so going to the mall with grandparents meant setting up shop at Chick-Fil-A and getting free chicken nuggets in between 🙂 It was normal and it was frightening when doctors would decrease the amount of treatments, because it’s just what we did.

If you ever have a chance to visit a Children’s clinic or hospital, I highly recommend it. Here are just a few of the Big Life Lessons I have carried with me from going to Duke Children’s, in the basement of the clinics!

1. Don’t ever take a hospital bed or admission for granted! Especially don’t “put off” being sick in any way. Because when you let something simple go too far, and end up at the hospital because “you just didn’t have time,” just think, you may be taking a bed from someone who desperately needs one. Be Proactive! Don’t be entitled and arrogant!
2. You truly have not witnessed the vastness of heartbreak and true joy, until you can sit in a waiting room with the kids at a Children’s Hospital/Clinic! The amount of tears and laughter shared is beyond more than I could ever put a $ value on!
3. Until I was in high school, the children’s clinic was in the basement of the clinics- and ALL pediatric patients came to ONE clinic. Pulmonary – GI – Neurology – Cardiac – Hematology – the list goes on… So we met so many different people. People who had traveled from all over the world and the US. They all came to a clinic that was at the most a 45 minute ride for me! It was so bizarre! My brother and I were taught to observe this at a very young age. All you had to do was look around the parking garage, as we parked, as we walked to our appointments, as we left. If I wasn’t taught to open my eyes and look around, I could have totally taken being this close to an amazing hospital for granted!
4. Being in the basement, gathered with all pediatrics, we got to know and hear some stories, witness some journeys, pray, and observe hard, different, and yet somehow similar daily chronic families!
5. I know the joy and giddiness of the simple things, that still make my heart flutter when I remember wishing for snack bar to be open as we made our way through the dark hallways at the end of a long clinic day. And when it was opened, all things were right with the world! Microwave pizza, peanuts, soda, candy bar, M&Ms, you name it, DAY MADE!
6. CLINIC DAYS: You pack for a possible hospital stay- well you might as well pack enough for the weekend! That’s how long these days feel- and the fact is some clinic days turn into hospital stays. Think about that the next time you have to go for a “check-up.” Your clinic bag turns into your “everyday-just-in-case-bag,” because most everyday someone needs something from it, but sometimes it may be the same person who says, “why do you always have THAT bag?” And to that, I simply roll my eyes, and remember the next time they ask for something out of my bag… well, they should just think about getting their own bag 😂

The picture today is my Duke Medical Card from the 1980s. You may remember the hospital bands that they would slide into a little machine and it would make a rubbed image (kind of like old credit card machines) of all your info, and they may have gotten it on the 10th or 15th try 😂 That’s what this card was for, accept I had to have it for appointments also. I have kept it to remind me of where it all started, what my parents sacrificed and advocated for, the choices they made too, as they say, “come in and close the doors at night and be a family.” I wasn’t clueless to the outside world, I knew my brother and I had struggles, but I also knew that we were worth the sacrifices- the activities, the social life, the invitations to different events. I knew that “for such a time as this” it was time to be a family of four, the other things could wait.