Invisible illness. It’s a concept getting more and more attention. Stories of suffering from chronic pain, renal failure, diabetes, and most publicly, mental health issues have peppered our social media feeds.
You may read of a friend, coworker or family member about to start chemo or radiation treatments for cancer and think to yourself, “Wow, I didn’t even know they were sick!” They didn’t show outward signs. They didn’t miss school or work. But, you’ve heard of cancer. And you know that certain kinds of cancer don’t “show” on the outside.
Apply that to other diseases that aren’t the big C. Rare diseases, that when someone tells you they have it, you stop and think, “Wow, I have never even heard of that!”
What does sick look like?
For a rare disease, sick might look like what you imagine. Sick might look like a person confined to bed, or a child in the hospital unable to enjoy being a child.
Or, sick might present itself to the outside world as not sick enough. Sick might show up looking completely fine during the school or work day, only to be completely decimated upon the return home; tired and weary from trying to NOT look or act sick.
Sometimes sick can look like an eight-year-old girl who is fighting for her life every day. Sick can look like not participating in all the same activities her friends do because she tires too easily. Every cold could mean missing school for weeks. Every exposure to someone with the flu could mean disaster. Sometimes, it looks like not sick at all, until you really look and see the incredibly dark circles under her eyes, the lack of bounce in her step, and the fact that she just wants to go home after school instead of trading Pokémon cards at the bus stop with her friends.
Sick can look like constant blood draws, frequent expensive trips to see doctors, and medications that make you feel less than yourself when you are way too young to understand why you are sad or angry. Sick can look like taking that medication even though it can stunt your growth, change your sleep patterns, slow wound healing, make you dizzy. But you take it to LIVE.
Sick can look like Hallie, who needs a bone marrow transplant for Diamond Blackfan Anemia, her very rare, and right now invisible, disease.
Invisible illnesses are real. And, they are heartbreaking. Hallie is changing the perception of what “sick” looks like.
People often judge others by what they see, though, the truth is we all know looks can be deceiving.
Elyse Barnard – Hallie’s Mom
LIFESAVING STARTS HERE
Register for the chance to save a life at:DKMS.org/HallieBarnard
Learn more about Hallie and how you can be a hero at: teamhalliebea.org
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