Having Lupus doesn’t mean the world gets less crazy. How to deal

Self-Care Checklist for when the world has lost its mind

Warning: I’m going to talk about current events. If you are in a phase of your journey where you have more than enough on your plate with just waking up every day and have no desire to know whats going on in the world, stop reading here. You do your journey and don’t feel guilty for a minute. With a disease like Lupus, we all do the best we can. There are plenty of great blog post you can read on this site that will help you on your journey that don’t deal with the news.

Now for the rest of us: This weekend was an especially brutal one. The events in Charlottesville are deplorable and heartbreaking. Like you, I am angry and sad. After holding vigil by my phone all Saturday, I was in a pretty horrible place. I woke up feeling ill for the first time in a long time and, frankly, a little depressed.

Maybe this describes you this past weekend or maybe it’s some other horrible thing happening out there that takes you down. Whatever it is, I want to remind all of us (myself included) how to manage our reaction to the craziness of the world so we can protect our health. This is vital because we aren’t just women with chronic diseases, we are a citizen of the world and what happens in it affects us deeply. But, unfortunately, the world didn’t stop being crazy when we got our diagnosis, and worry and stress tend to exacerbate our symptoms.

These are the things I reminded myself that help me take care of myself while being a citizen of this world.

  1. Care and worry aren’t the same things.  I give myself permission to care about the world and the people in it, but my worry doesn’t help anything. My worry doesn’t stop bombs, or change hearts, or rewrite history. My worry only hurts me; it compromises my physical and mental well-being. When I figured this out, I started saying this mantra when I find myself being consumed by worry over issues I can’t control: “I can care deeply, but this situation doesn’t need my worry.
  2. Act on your convictions. If you struggle to get out of bed every day you might be inclined to skip this step, but please don’t.  When I say act on your convictions, it could mean go volunteer or go to a meeting to talk about the big issues and brainstorm solutions, or it could just mean pray or meditate. Smile at a stranger. Tell someone in your life how amazing you think they are.  Action doesn’t have to be a big grand gesture, it just means to strike back against the ugly with love. Remember to direct that love as much inwardly as you do outwardly.
  3. Use your energy wisely. I woke up on Sunday feeling horrible because I spent my energy on worrying over Saturday.  When you have dealt with or are dealing with fatigue (like the exhausted in your bones kind), you realize that energy is kind of like money. You don’t always have it. If you don’t spend it wisely, you can end up hurting. Spend your energy wisely, preferably on things that will increase your energy and help you heal.
  4. Get yourself to your community. A big part of taking care of yourself is finding and being apart of a community of uplifting people who support you and are worthy of your open heart. Maybe that means your local lupus support group and/or your church. Maybe it means an online community of people who share your love for knitting or Jane the Virgin. Thanks to the internet, community can be cultivated anywhere, it just takes action on your part to find it and show up.

The world is a broken place filled with broken people but it’s also a beautiful place filled with loving and caring people. Take care of yourself, your heart, and your mind.

XOXO,

Carrie

2 Replies to “Having Lupus doesn’t mean the world gets less crazy. How to deal”

  1. Love this. I know from experience the value of muscling through those so-so energy days by getting out there and giving of yourself for something of value. As a nurse, there are days I go to work wondering how I’ll get through the long shift, but so many days I leave feeling so thankful that I got outside myself and went to help people. That does more for me than any pill they’ve ever prescribed. But then there are those truly Lupus ugly days where I can’t do anything but be still. These are the praying days, instead. Thanks for sharing.

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