When you have a rare disease, it sometimes becomes all-consuming. It’s hard not to focus on all the things you can’t do now, or wish you could return to the “good ol’ days” before your disease invaded your life. I doubt there’s any one of us here who hasn’t (at least once!) asked the universe to just be normal again for one day!
But as we adjust to our new normal, eventually we start realizing that living with this rare disease isn’t as hopeless as we may have thought. In fact, we may even find ourselves having days that are almost–dare we say it?–normal. We may even have days where we can forget that we have a rare disease!
No matter what, we’ll realize that all the hard work we’ve been putting to fight this rare disease is finally paying off. And in these moments, we realize we’re the one crushing this rare disease, not the other way around.
Here are some more moments when we know we’re kicking our rare disease’s ass.
1. When you get your labs back, and your numbers are FINALLY headed in the right direction
2. When you stay awake throughout an entire event
3. When you walk up the stairs in your house without your legs feeling like death
4. When you take your medicine and you don’t have side effects
5. When you make it through the “gentle exercises” your doctor recommends without excruciating pain
So celebrate! You are one badass rare disease superhero!
