Living with a chronic illness can often feel like working a full-time job - the kind of job without lunch breaks, weekends off, vacation time, and, well, you get the gist. It takes work, hard work to keep these bodies working and functioning at the most basic human level. If you or your loved one has been affected by a chronic illness, I’m sure these words are nothing new to your vernacular. I'm sure you can attest to what it takes to make your physical well-being a priority.
I was diagnosed with spinal muscular atrophy at six months of age, so living with a chronic illness is all I’ve ever known. SMA is a degenerative disease that affects the motor neurons in my body. Simply put, my muscles don’t work well. I can’t walk, I have respiratory issues, and most of the mobility left in my body is limited to my head and fingers.
For 28 years I’ve made managing my care a top priority, and I could sit here and tell you all about the challenges I face on a daily basis. I could recount those dark places my disease has led me to and the uphill battles I’ve overcome as a result. But, as I got older, I realized that while it's important for me to manage my physical well-being, it is equally important to manage my emotional well-being. After all, that is when I truly feel at my healthiest. So, in order to maintain a balance, there are several techniques I practice even on my hardest days. Today, I’m here to share them with you.
First and foremost, develop an attitude of gratitude. I’m sure this practice has been ingrained into your brain a million times over. However, learning to take inventory of what I’m grateful for has been a game-changer in my life.
This especially holds true for the hard days. Trust me when I say I get it. Some days there isn’t much to be grateful for. Some days, the only amount of physical energy you’ve exerted is moving the mouse cursor over to a button to let Netflix know you are, indeed, still watching (and will be for the next six hours). I’ve been there and, more often than not, would go to bed angry at how unproductive or useless my body was that day. This always left me feeling discouraged, so I chose to rewrite my narrative. And, instead of being angry, I went to bed thanking my body for giving me the gift of life and not choosing to give up. Some days, that’s all you can do.
Saying Words of Affirmation
My affinity for words stretches far and wide when I think about the power they hold, so that’s why I keep words of affirmation close when I’m nurturing my emotional well-being. Whenever I feed myself lies about how I’m not worthy enough, strong enough, etc., I will whisper the opposite to myself as I go about my day.
I’ll never forget leaving a doctor’s appointment a few months ago and feeling so disheartened after picking apart every little thing my body couldn’t keep up with. My soul was crushed. I turned to my mother and said, “I am such a failure.” The minute those words left my tongue, I realized how untrue and unfair it was to discount all of my successes to date, and my mother echoed the same sentiments. For the following weeks, my words of affirmation were simply, “I am not a failure.” We live in a world where our chronic illnesses try to box us into certain labels or fallacies, but as unfortunate as this may be, we have the power to change that.
Taking Time to Rest
I often fall short on giving myself time and grace to rest, so these words I’m writing for you are also serving as a reminder for me. Rest is not indicative of weakness. It’s not indicative of the fact that you are not capable or strong enough to face whatever it is you’re battling. It simply means your body needs to slow down and take a breather. Society may tell you it takes grit and hustle to be successful, but one day I finally realized success isn’t measured in the work I accomplish. It’s measured in how I nourish my body and soul.
Finding Your People
Despite sharing much of my life online, I struggle with letting people into my real life. However, there are a few trusty souls that I confide in with my whole heart, and these souls always know how to instantaneously lift my spirits. With that said, find your people. Even if your illness keeps you from meeting friends in real life, there are great online support groups filled with people in your EXACT situation who are looking for a friend like you. Never be afraid to put yourself out there in fear that no one would understand.
There you have it, friend. These are just a few of many suggestions on how to nurture your emotional well-being while still meeting your physical needs. Remember that understanding and implementing them is a work-in-progress—something I continue to work (and sometimes falter) at every day. But just because it isn’t easy doesn’t mean it isn’t worth it. Are you with me?
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