Intentional Living with a Chronic Illness
For the first two years after developing a chronic illness, I was barely surviving. Intentional living and feeling purposeful weren't ideas that ever crossed my mind. Although I didn’t realize it at the time, I was living intentionally though. I was living with the intention of being able to sit up without passing out or having a seizure, and later on how to stand for more than a minute. I was living with the intention of going back to school, no longer having daily panic attacks, and finding peace. Slowly, as I accomplished those goals, I felt numb. I was still very ill but my symptoms were more stable. With this new stability, I was able to let my guard down a little.
At this point in my journey, I had moved out on my own and really struggled with living intentionally. I didn't want to do anything, I didn't feel motivated, I just felt terrified that any sudden movement would bring me back to feeling as awful as I did when I first got sick. I realize now that I was decompressing. I've talked in the past about how I found an article that explained how to schedule your day when you bring home a rescue dog. This article focused on the concept of decompressing; it emphasized the possible traumas your dog may have experienced, the certain fears, and how your dog needed the space and time to slowly adjust. The article recommended that you don't bring a ton of family and friends around to meet your new dog, nor bring them to dog parks or on stimulating adventures, but just live a slow and simple life for at least 2 weeks to allow the dog to adjust. Similarly, the first year living out on my own after 2 years of being bedridden and/or housebound at my mom's was a year of decompressing. I needed it and I don't regret doing it.
But eventually my decompressing started to feel like procrastination. I've since learned that a procrastination is a symptom of fear. I wanted to do more but was afraid to push myself into a flare, but if I didn’t push myself then I ended up feeling guilty.
My thinking looked a little like:
I can't do anything -> I am nothing/I am a burden -> I can't do anything.
It's a self-fulfilling prophecy really. A cycle. A victim complex.
At this time I was going to school part-time and trying to slowly integrate back into society. I was attending classes and even prioritizing working out, yet I didn’t feel like I was living intentionally. I was doing the things I feared I may never be able to do again, but my life still felt numb at best and meaningful at worst.
That’s when I realized I was mistaking productivity for purpose.
Society puts productivity on a pedestal but even hard-working, successful people who enjoy their line of work can be left feeling deflated and purposeless.
When you develop a chronic illness you realize how much your identity was placed in your abilities and your daily schedule. Then when I was slowly gaining abilities I realized that I went back into old bad patterns: trying to create a purposeful life by creating a busy schedule.
And busy might look like something different for you, but for me, busy meant doing 2 things a day because that’s all I could handle at the time (and sometimes still now).
One thing I’ve unintentionally learned since then is that creating a purpose outside of myself was necessary in order to experience a fulfilling life while chronically ill. Our identity and worth can’t stem from our productivity, even for healthy people, but we have just been forced to see that.
In the past I’ve talked about goal setting with a chronic illness, and making New Years resolutions when you’re chronically ill, and those blog posts kind of speak to his topic on a practical level. Staying motivated when you’re chronically ill (and therefore chronically tired!) is really hard. But on a more general level, purpose can be fulfilled without getting out of bed. As a Christian, my purpose is to glorify God in all I do. I can be loving, honest, humble, merciful, and share God with people without getting out of bed! In fact, I believe God sees having a relationship with Him and living in an outflow of His love as the ultimate purpose.
Even if you aren't spiritual, and don't believe everything happens for a reason, you can create purpose in your life. It has helped me so much with my depressive symptoms to feel a sense of purpose outside of myself. Whether it's to bring awareness to a certain illness, to be a speaker, to paint, you can find a sense of purpose and fulfillment.
For me, the most rewarding way to do this has been through making a mission statement. My personal mission statement came to me after reading Lysa Terkeurst's book "Uninvited." She talked about how our insecurities prevent us from receiving the full love of God (self-love) and pouring it out onto other people around you. Her book talked about "living loved" (wording I used in my personal mission statement). She specifically talked about how she always assumed this one woman from her gym hated her because of this look she gave her one day. Later on she realized she was projecting her own insecurities on her and that woman didn't think poorly about her at all. How entering a room "living loved" is energizing instead of draining for the people in it.
Your mission statement doesn't have to be huge or permanent. You aren't less purposeful if you find fulfillment in something small. In reality, "living loved" just means I don't hate myself and therefore am not mean to people around me. That's actually really simple, no matter how profound I make it seem.
Your mission statement can just be 1 small positive thing you want to focus on that you can do even when you're bedridden. This last part is necessary because if your purpose is placed on your productivity, you will be left depressed whenever your symptoms get in the way of your to-do list. If your purpose is found in productivity then that's another form of perfectionism.
if you don't know where to start, do what I did: I wrote down a list of everything I like. Literally from coffee to sunshine to friends. Then I wrote a list about my passions which ranged from animals to politics to authentic community. Then I wrote down people in my life: who can I reach? If I were to reach people in my life, how would it be? I have my family, my friends, my church, acquaintances from school, and my POTS community. Then I wrote down what I think I'm good at: investing in friendships, organizing things, writing, etc. Then I wrote down what people have prophesied over me (a Christian thing): that I am called to redefine church for my generation, that I will teach and counsel people, that I will be a speaker and writer. Then I wrote down my current abilities and lack of. Then I tried to connect the dots (it was a really messy journal entry) to find some overlap. What is my life pointing to? What can I do with the resources, abilities, people, and passions I have now?
A lot of time I feel like the answer is "nothing," and you might too. But don't let your emotions trick you on this! We influence everyone around us. You have purpose whether or not you know what it is. And chances are, it's not this 1 big profound, earth-moving thing! Investing in your own wellbeing and the wellbeing of those around you is actually a crucial way to influence this world! Don't let your lack of abilities convince you otherwise. If your goal is to be kind this year, then be kind. You can be kind whether you're in bed or not. Sometimes, as I talked about in my New Years Resolutions blog post, it helps to have 1 word to focus on each year or month. This word can help drive you toward something instead of running away from something.
Often times you don't find your purpose, but create it. It's not lost somewhere. I always struggled with the idea of finding myself because if I couldn't find myself, who the heck was I? I felt more insecure than ever with that mindset. Creating myself, and purpose, through small intentional acts in the right direction has been the most life-changing aspect of living with a chronic illness for me. If I didn't have you guys on my POTS community, I would feel a lot less purposeful and a lot more alone.
What's one thing you're trying to focus on this year? Share in the comment section below! There's no idea too small.