Sifa’s Corner started as a journal to document my personal experience with chronic illness- Thoracic Outlet Syndrome. Since starting the blog 10 years ago, I met with many people who were suffering silently and just needed someone to listen to their troubles. Today we have one of my chronic illness-friends to share her personal battle with chronic illness- the life lessons she learned from becoming chronically ill.
This article is contributed by Sara Gruber- A former journalist and PR professional. Sara’s life was interrupted by a diagnosis of dysautonomia, which took much of her mobility. Now, she is redefining life as a mother, wife, and friend, documenting her lessons from living with chronic illness at blessingsofchronicillness.com. To learn more about her, visit her blog. Let’s read her story:
Life Lessons I Learned from Becoming Chronically Ill:
I didn’t expect to become chronically ill. I didn’t expect my ability to walk and care for myself to come to a screeching halt… but it did. Overnight, my life changed. Our family dynamic shifted. My identity was shattered and is being rebuilt.
I have POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia. Basically, my automatic nervous system is not working correctly. For example, when you stand up, your blood vessels automatically contract to keep your blood from pooling in your feet. Mine don’t do that, so my blood pools in my lower extremities. This means that a lot of my body is not getting the blood and oxygen it needs, so my heart works extra hard to compensate for this, and I become very weak. Some people with dysautonomia are bedridden, some live “normal” lives. I hover in between.
Another thing I didn’t expect was for my illness to change me for the better. I am learning that we can discover the best parts of ourselves while being ill. In these moments, we go deeper into what matters and what doesn’t, who we want to be, and who we want to be with. The best way I can describe it is that you live with the shadow of death. You know how after a loved one passes away; you have this period of clarity where you’re better able to prioritize what matters? That’s what living with an illness is like.
If I could distill it for you; these would be the top three things that being sick has taught me about living a better life:
How things look are not as important as how they feel.
I mean this in every way possible! Your body, your home, your relationships. I didn’t realize how much energy I was putting into the aesthetics of life until that energy was gone. I have to be very deliberate in what I choose to do now. So, how something looks is of little consequence to me.
My body—People have complimented my recent weight loss. Skinny isn’t always better. I lost weight because I’m sick. It does not feel good to live in this body anymore. The old me used to be able to jog two miles a day and indulge in a glass of wine or a cup of coffee (two things I’ve had to give up).
My house— My cute little house used to be a shrine to all things OCD, and I drove my family crazy keeping it that way. Chores came before quality time because I didn’t know how to “just be” in a dirty house. Now, there are many days where I have no choice but to sit on the couch or lay in bed. To my surprise, these end up being some of my happiest times, even if the house is dirty. It’s in these moments where my family plays Uno and picks up sticks, where we talk about our beliefs and express our love.
My relationships—This one is harder to put into words. Let’s try this… you see a little girl helping her disabled mother walk and feel sorry for them, but this girl and her mother have an unbreakable bond that you can’t see. There is beauty here. One of the biggest blessings of becoming ill is how much closer my family has become. We’ve always adored one another, but there are new layers of devotion. The unexpected bonus is that my children are becoming some of the most compassionate humans I’ve ever known—and I don’t just get to know them; I get to be their mom. I do get sad about the extra load my husband is carrying, and I worry about him burning out. I’m humbled by seeing how he longs to make my days as easy and joyful as possible. I don’t think I ever truly understood how much he loves my soul.
You are stronger than you think and braver than you know.
This path has shed light on a strength I didn’t know that I had. I’ve been through the wringer, and I am still going. What’s more? I am still happy. I’ve had days where I could not take more than 10 steps without collapsing to the floor. I have seen the fear in my daughter’s face and the pain in my mom’s eyes. I fight every day to live a better life—for me and those around me. I push myself in physical therapy. I am kind to myself. I give myself time to fall apart. I am so much better to myself than I was before, inside and out. I used to think I was weak, timid, not as worthy of a voice as others… I had no idea what I was capable of. We don’t get to choose our trials, but I think you’ll be surprised by your strength when your moment comes.
Suggested read: What to Gift Chronically Ill Moms?
You are in charge of how you spend your energy
Physically and emotionally, I have to be very deliberate with how I use my energy. Before I became ill, I had a maxed-out to-do list. I didn’t see how I could remove anything from that list, and I didn’t feel like I had the luxury of reprioritizing. Becoming ill cleared my schedule and made my circle small again. There’s a blessing in that. There are days where I have to lay down to recover from showering. So, imagine how conscious I have to be in organizing my schedule to get everything else in: working, making meals, caring for my daughters… The result is that anything not important drifts away.
Internally, I am more purposeful with who I want to be and who I want to be around. As someone who has gone with the crowd too often in life (no one wants to admit this about themselves), it would probably take something like chronic illness to show me that I am most definitely in charge of how I use my energy. Now, I am better at speaking my truth, allowing others to speak theirs, and surrounding myself with people who fill my spirit.
My boundaries are strong. If something depletes my limited energy and does not increase the greater good, it is not allowed. It’s like cleaning your soul and making room for what really matters. This has cleared spaces I didn’t know I had and shed light on callings I didn’t expect. It gives me the energy I need for my new life.
Thank you, Sara, for sharing your story with us. I know the readers will love the honesty and the heartfelt, raw emotion. If you are reading this and loved her story, please follow Sara on Facebook, Instagram, Twitter.
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