Living with a rare disease is often challenging. But sometimes it can be downright exhausting.
You know the feeling. You’ve hit the mat so many times that you don’t have the strength to lift your shoulder, to pull yourself back up by the ropes, to take another swing at your adversary.
All you want to do is lie there until the room stops spinning and the pounding in your head subsides.
But you can’t. There’s too much at stake. Too many people are depending on you. And deep inside, you wonder whether you’ll be able to get up at all if you stay down too long.
How do you cope? For starters, remind yourself that this is a long match. The round you’re in at the moment will eventually end. You’ll hear the bell and retreat to the corner.
Once there, allow your support system to help you prepare for the next round. Let them give you encouragement. Medical care. Strategy adjustments. Be it friends or family or the online rare disease community, make sure you have the right people in your corner.
When a new round begins — and one always does — you have to put the previous rounds behind you. Focusing on what you didn’t do right before only distracts you from the fight ahead.
Some of you have been in the ring for decades. My match started 8 years ago. There have been times I thought I was down for the count, and other times when I’ve prematurely raised my gloves in the victory I only thought was mine. There’s always a surprise, an uppercut you didn’t see coming, a quick jab before you smack into the mat.
Down. Again.
But not for the count. Close, perhaps, but not for the full count.
Today you may feel like you’re too tired to swing. You may be counting to ten in your mind as you tell yourself “I just can’t go another round.”
You can. Take some deep breaths. Listen for that bell that sends you back to your corner. Regroup. Focus on the challenges ahead and how you plan to attack them.
And never forget that there’s a crowd of fans surrounding the ring. We’re cheering you on. Listen to our voices, hear our words of encouragement. Working together we can all stay in the fight.
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