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The Advice No One Gave Me on My Diagnosis Day

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I remember my diagnosis day. My doctor gave me a bunch of suggestions about how to handle “episodes” and gave me a prescription for a drug, which quickly turned into about five different prescriptions.

Shortly after realizing the medications weren’t working, people offered up their ideas about what I should do to treat my illness. But the problem is if it worked for one person, it doesn’t mean it will work for another.

Although we appreciate that we’re cared for and that people want to see us get better, it reminds us what we’re fighting is incurable. There is no one-size-fits-all approach. If it’s out there, chances are, we’ve tried it.

Since my diagnosis, I’ve found myself doing some really silly things, hoping and wishing that one day I’ll be cured. It can be incredibly frustrating to hear how one treatment worked for one person, but it doesn’t work for you. You feel like a failure, like you aren’t doing something right, but you’re doing everything you can.

What no one tells you on diagnosis day is that fighting chronic illness is not a sprint. There is no finish line. There is no set number of treatments you must undergo to get to recovery. There is no miracle drug you can take and feel better.

You’re constantly in a battle, fighting a war that’s bigger than you realize. It’s OK to be scared. Some days will be really, really hard. Some days you won’t recognize the body you’re in. Your body will feel inorganic and foreign to you. It won’t cooperate. It doesn’t let you do the things you once loved.

There will be days when you can’t get out of bed because your world is literally spinning. When you can’t even make it to the bathroom or get yourself a glass of water to take your meds.

Here’s the advice I wish someone would have given me on my diagnosis day: Take it one day at a time and …

1. Rest

Sleep and rest. This is the one thing that took the longest for me to do. For so long, “resting” was just a waste of time. What was the point of this life if not to get out? What I’ve learned is that resting is letting myself live. It lets me live for the days I can do things. It lets me live for the days when my illness doesn’t win and I can throw a few extra punches in on it.

2. Relax

The old saying “Rome wasn’t built in a day” can ring true for chronic illness warriors everywhere. Just because the day doesn’t go the way you want doesn’t mean the day was a waste. No day is ever a waste. Take everything in stride. I like to sing “Let It Be” to myself on bad days because sometimes that’s all you can do. You can’t change it. Worrying or stressing won’t make it any better. In fact, it’ll make it worse. So kick up your feet and try to relax and breathe.

3. Dream

Keep on dreaming your dreams. I have given up so much to chronic illness. I am no longer capable of doing the things I was able to do a short nine months ago. But that doesn’t change who I am, though, and it shouldn’t change you.

So if you want to travel the world, you will one day. It may look different than you had imagined, but don’t ever give up on those dreams just because things look bleak from your bedside.

The hidden gem about chronic illness is that although we may lose a bit of our dreams for a little while, we enjoy the sweetness of triumph in even the smallest of things. We don’t take the little things for granted. There is joy in that. Too many people walk through this life never appreciating everything they have.

Take pride, little warrior. Soon this day will pass.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 12, 2016
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