Sometimes, I ask God to pause everything. Not forever, but long enough to catch my breath. Long enough to stop being needed by everyone. Long enough to rest without feeling guilty about it.
Because life doesn’t stop when you have a chronic illness like transthyretin-mediated amyloid cardiomyopathy (ATTR-CM). There are no timeouts. No pause button. Life keeps coming.
Our family is in a season in which our son needs us desperately. He is struggling, and you fight harder when your child can’t fight for himself. You make the calls. You ask the questions. You push against systems that don’t understand. You keep showing up when you’re exhausted, because you are his parents, and you can’t just walk away.
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Do I have the strength today?
But sometimes when I’m fighting for him, I quietly wonder how much fight I have left in me. There are days when I look at the simplest things — like getting dressed, brushing my teeth, making breakfast — and I wonder: Do I even have the strength to do this today? And then I get up, anyway.
That’s the part most people don’t see.
People see happy Faye. They see the woman who’s always moving, writing, advocating, helping, laughing, going places and encouraging others. That woman is real, but so is the woman who comes home completely spent. The woman who sits quietly because she doesn’t have the energy to explain how tired she is. The woman who wishes she could disappear under the covers for a week and let the world figure itself out.
But the world doesn’t stop. My son needs his mom. My husband needs his wife. Life needs Faye, so I keep moving.
Because what happens if I stop? What happens if I let myself feel how tired I am? What happens if I admit that I don’t have it all together? What happens if the woman everyone thinks is strong says she can’t do it today?
Grateful but still grieving
Maybe that’s one of the most difficult things about living with a chronic illness: I can look fine and still be fighting a battle nobody can see. I can smile while my body is screaming.
I’ve learned that I can be grateful for my treatments and still grieve what the disease has taken from me. I’m so grateful for the medications that help slow this disease, but slow doesn’t mean stop. ATTR-CM still affects my life and asks me to make decisions I never thought I’d need to make.
I’m trying to protect my future and survive my present. There are days these two things feel impossible. I pray a lot in these times. God, please just pause everything. Please give me a minute to catch up. Please give me enough strength to do what my family needs me to do.
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Sometimes, I wish God would answer by taking everything away, but maybe that’s not how He works. Maybe God gives us strength for the next five minutes — not the whole week or the whole battle. Just the next step. And then tomorrow, I’ll ask for that strength again.
Neither is less worthy
I wish I could tell you I’ve figured out how to balance chronic illness and life. I haven’t. There are days I do it beautifully, and days I barely do it at all. Sometimes, I’m the Faye everyone sees. Other times, I’m a woman, sitting at the edge of her bed, asking God to help her find enough strength to stand up.
Both women are me, and neither one is less worthy.
If you’re living with ATTR-CM or another chronic illness, please hear me: You don’t need to be strong every minute. You don’t have to make your illness look easy. You don’t need to apologize for resting. And you don’t need to feel guilty because all you could do today was survive.
There will be days when you’re the fighter, and there will be days when you’re the one who needs to be carried. I’m learning that both are OK.
Life might not stop because I’m sick, but neither will I.
