What you learn from living with chronic illness
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.
Looking back though, I’ve known something wasn’t right with my health for the past 20 years. I felt ill (dizzy, heart palpitations, anxious, bouts of weakness, heat intolerance…) but functioned fairly well. Doctors couldn’t pinpoint the cause. So, anxiety and vitamin deficiencies were blamed. On the outside, I was thriving as a mother, wife, employee, and friend.
A few days after Christmas, I became weak and dizzy. I would sit on the floor to rest while walking across the house; and we have a very small house. I thought it was a virus, but it never went away. Instead, it got worse and I started losing mobility. I bought a cane, then a walker, then a wheelchair. After weeks of tests, we discovered that I have POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia. Basically, my automatic nervous system is not working correctly. 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.
While debilitating and incurable, this illness is not fatal. It is something I can live with and hopefully learn to thrive with. I have good and bad days, healthy seasons, and periods of flare ups. Every day I am learning more about how to care for my new body and how to protect and grow my spirit through this battle. Believe you me, when you become trapped in a body that no longer works; your spirit has to fight to stay positive, sane, and find the light in every day.
Along this journey, I am learning that we can discover the best parts of ourselves while being ill. It’s in these moments that 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 illness is like.
While my body recovers, my spirit is hard at work. I’m changing in so many ways. My energy is limited so I have to be very purposeful with how I use it. If something depletes me 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 gives me the energy I need for my new life.
I also see people differently. I’m more compassionate and have a higher tolerance. We all have so many trials: chronic illness, the loss of a child, mental health challenges, unemployment, abuse… I don’t know what roads people have walked and want to give them every grace; I know that I need a lot of grace.
One big thing that has surprised me—I am stronger and braver than I knew. I can handle this not because I want to but because I have to. Sometimes, I want out of this lifepath. I want my old body back with all of its freedom and abilities. I imagine God asking me, “Would you like and easy and beautiful life where your spirit grows a little or would you like a challenging life that reshapes how you see the world? Either way, I’ll be with you.” And I imagine myself saying, “Easy is good. I can grow a little.” Maybe that’s why this wasn’t my choice, but I definitely feel that God is with me on this journey.
Chronic illness is a teacher—for those who are sick and everyone around them. It’s not the teacher I would have chosen, but it’s the teacher I have.
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Thank you,
Glenda, Charlie and David Cates
