It’s not a line you would expect on a resume: successfully kept four small humans alive through chronic illness. It sounds glib to describe several years of my life in those terms. Still, the truth is that surviving the physical, emotional, and mental devastation of chronic illness is an achievement in itself, let alone doing so while raising children.
My chronic illness journey began several years ago with a cough that wouldn’t go away before progressing into an illness that can only be described as devastating and uniquely debilitating. My ability to exercise or take positive steps for my health evaporated overnight as I struggled to complete the most basic of tasks without sending my body into a crash that would leave me bedbound. Amid dozens of appointments with various doctors and hours spent scouring the internet hoping for an armchair diagnosis, I had four children at home who needed a constant outpouring of my time and energy.
In truth, I struggled. Without question, it was the hardest period of my life, and when I look back, the memories of the challenges I faced still feel fresh. I remember the sharp grief as a daily reminder of what I could no longer physically accomplish. I remember feeling trapped in my body as I watched other parents interact energetically with their children. I remember the tears I cried as I gathered myself to push through another day, whispering prayers for a strength that was beyond my own.
It took years of searching, but I finally found the answers I needed and started to get better. I was able to improve my most debilitating symptoms, but being ill for that length of time came with consequences. I am no longer the person I was before my sickness. My body simply doesn’t work the way it did before I became chronically ill and, like many of us, I am still on a journey of acceptance.
These last few years have taught me a great deal about life and sickness. At times, they have been unforgiving instructors on the experience of parenting while chronically ill. With those hard-won lessons in mind, I wanted to offer a few things that were especially impactful during the most challenging points of my illness. Whether you are walking your journey without children or parenting through chronic illness, my hope is that you will remember that you aren’t alone.
1. Actively combat isolation.
Isolation is insidious. It creeps up on us without warning and convinces us that being alone is better. When battling chronic illness, we may be lured into the belief that it’s simply easier not to engage with family or friends.
At times, parenting can also be an isolating experience, leaving us feeling enslaved by nap schedules or by school dropoffs. Everyone has an opinion on the right way to feed a baby or discipline a misbehaving child, and it’s all too easy to shrink away from interacting with others out of our own insecurities or simply due to exhaustion. Chronic illness adds an entirely different aspect to parenthood and another excuse to stay home, avoid text messages, or withdraw from the people who care about us. While maintaining healthy boundaries is crucial for those of us who are chronically ill, it is vital to choose a few people and be intentional about nourishing those relationships. Take a moment to send a text or invite a friend over for a cup of coffee. You don’t have to get into the details of your latest medical test results, but choosing to invest in those relationships will leave you feeling less alone and isolated.
2. Ask for help.
Many people who struggle with chronic illness grapple with fatigue, and my experience was no different. On the days I was able to get out of bed and actively participate with my family for a few hours, I often collapsed on the couch after dinner for a nap before bedtime. The fact of the matter was that I simply couldn’t do it all by myself. I had to release my pride and give myself permission to ask for help.
Reaching out for help can be a tremendous challenge. We are sold the idea that we should be able to do it all by a society that always strives for more and for better. We are told that independence and achievement are the pinnacles for which we should strive, but the truth is that we are made better by reaching out, by our acknowledgment that we can’t do life alone, and by our refusal to hold ourselves to an unhealthy standard. This might take the form of asking a family member to make a meal, reaching out to a friend for childcare, or asking a spouse to take on additional household chores. Acknowledging our limitations can be difficult, but prioritizing the things that are most important while making room for help allows us to be fully present in the moments that matter.
3. Set yourself up for success.
Even when we engage in relationships with others and ask for help when we need it, some responsibilities in life are simply unavoidable. Whether it’s the laundry, cooking, or emptying a pail of dirty diapers, chores have to be done one way or another. Setting ourselves up to succeed is the best way to cope with unavoidable tasks. We do this by breaking things up into bite-sized pieces or by planning with our personal capabilities in mind. For example, if I knew that I would likely be battling fatigue by dinnertime, I could plan an easy meal or cook earlier in the day. If I knew I needed to deep clean the bathrooms, I could plan around my energy levels, giving myself the option to pivot if the work became too much to accomplish all at once.
That’s the beauty of setting ourselves up to succeed. By establishing our own standards of accomplishment, we move the bar to a place where we can celebrate our achievements, regardless of the opinions of others. If you aren’t able to make dinner, are you able to plan the meal? Order the food? Set the table? If you can’t deep clean an entire bathroom, can you wipe down the countertop or spray the shower? If we give ourselves permission to feel satisfaction in our achievements while still maintaining flexibility based on our ever-changing symptoms and energy levels, we remove the power of guilt over our circumstances and allow ourselves to live in freedom.
4. Incorporate grace.
When we become accustomed to living with chronic illness as our constant companion, our lives often become characterized by our limitations and by the feeling of being insufficient or flawed. Raising children under the shroud of our illnesses can magnify this feeling as we wonder if our disabilities are hurting our children. We may wonder what opportunities our kids are missing because we are too ill to leave the house or too fatigued to be creative. We may begin to compare our lives to those of others we know or see online with photos of lively outings and exciting adventures.
You might not be able to go on energetic adventures or climb to the top of a mountain, but that doesn’t mean you are defective; rather, your perspective may be skewed. In the same way that we need a new prescription to update a pair of glasses, we need to approach our situations with a perspective that allows us to see clearly, and to do this, we need grace. We may not take our kids on every outing, but there is grace for that because our children are loved fiercely. We may not always make elaborate dinners that perfectly meet nutritional guidelines, but there is grace because our families are fed. We may have to cancel plans when our symptoms flare up, but there is grace because we are prioritizing what our bodies need.
The truth is that grace makes all the difference in the world. It changes how we see ourselves, how we see others, and how we approach life. Grace is radical in its refusal to comply with worldly standards and liberating in how we are allowed to be authentically ourselves without the burden of guilt.
Years after I experienced the first symptoms of my illness, I look back on that struggling mother with a sense of admiration. I did the best that I could while leaning on those around me and learning to allow grace to cover the rest. Although it didn’t change my physical symptoms or offer the cure I so earnestly wanted, it provided a different type of freedom, one which allowed me to stop holding myself to unrealistic standards and to see myself through the lens of grace. It gave me the courage to parent through days of overwhelming symptoms and the freedom to let things go when I couldn’t do it all.
As we move forward through our individual chronic illness journeys, we will face unique experiences, symptoms, and challenges, but for all our differences, we are not alone. We can reach out to family, friends, or the People Hope community for support. We can ask for help and work within our limits toward achievable goals. Through it all, we can practice extending grace, knowing that grace gives us the freedom to embrace our perfectly imperfect selves, chronic illness and all.
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Written by: Alyssa Gamlin
Known by her friends and family as everyone’s favorite filterless mama bear, Alyssa is as real and authentic as they come. How she found time to write this piece for you, dear readers, we’re not sure, as Alyssa is daily juggling her own chronic illness, parenting a chronically ill kiddo, homeschooling all 4 of her kids, and pursuing her master’s degree in counseling and psychology! While this soccer mom may love a basic caramel and vanilla latte, don’t be fooled by her exterior. Alyssa is a self-admitted nerd through and through, having learned Elvish in high school, and now sporting a Lord of the Rings tattoo to match. Oh, and does Alyssa look familiar? We think you might know her sister, Anna…