BY MAUREEN MICHELE

Everything seemed to be going according to plan. I had worked tirelessly to become a mom, doctor, and Army officer – the culmination of my childhood dreams. However, just like a sudden crash in the stock market, my world came tumbling down when my daughter was diagnosed with neuroblastoma, a type of pediatric cancer. The fear, uncertainty and despair that consumed me during that time were unlike anything I had ever experienced before. I successfully navigated the challenges of surgery, chemotherapy, NG tubes, and central lines with my daughter and thought I could put the nightmare behind me. Life, though, can be unpredictable and volatile. Years later, I found myself standing in a small school bathroom, surrounded by medical supplies I had taken from my pediatric clinic. In this moment, my world once again came tumbling down when I became the doctor who diagnosed my 12-year-old daughter with Type 1 diabetes. Overwhelm, fear and despair returned and replaced the pride, excitement, and hope that had been present after my daughter beat her cancer diagnosis. 

Through my experience as a physician and mom, I know it is not uncommon to feel overwhelmed parenting a chronically ill child. The constant demands and challenges of caring for a sick child can leave you feeling exhausted, stressed and emotionally drained. However, it is important – and I believe helpful – to understand that overwhelm is a natural reaction to a challenging situation. By recognizing the types of thoughts that create overwhelm and developing strategies to manage them, you can better navigate this difficult journey.

“All or Nothing” Thoughts

One of the types of thoughts that can create overwhelm is “all or nothing” thinking. This type of thinking is characterized by black and white, either/or, and extreme statements. For example, “If my child isn’t getting better, then I’m a terrible parent.” This type of thinking is not only unrealistic but can also be harmful to your mental health.

One day during Kyleigh’s treatment of neuroblastoma, as I was flushing her central line, fluid immediately leaked from the wound site. Panic set in as I realized the line had become dislodged and nonfunctional. I couldn’t help but think that this was a major setback and a sign of my failure as a parent. My mind raced with all-or-nothing thoughts, like “If I can’t even handle flushing a central line, how can I possibly take care of my child’s chronic illness?” I felt overwhelmed and defeated, like there was no middle ground between success and failure. It took me some time to realize that this kind of thinking was neither productive nor true.  I learned that it’s okay to make mistakes and that setbacks are a natural part of the journey in managing a chronic illness. By letting go of my “all or nothing” thinking and embracing the process, I was able to be more present for Kyleigh and provide her with the best care possible. I was also able to have more grace for myself. 

Suggestion:

Mindfulness  or pausing to think about your thinking – can help you become aware of your thoughts and emotions, allowing you to recognize when you’re engaging in “all or nothing” thinking. Once you’re aware of this type of thinking, you can challenge these thoughts and find more balanced and realistic alternatives. For example, instead of thinking “If my child isn’t getting better, then I’m a terrible parent,” you could reframe this thought to “My child’s health is not solely dependent on my parenting, and I can still be a good parent even if they are struggling with their health.” By practicing mindfulness, you can break the cycle of “all or nothing” thinking and reduce feelings of overwhelm and anxiety.

“Should” Thoughts

Another type of thought that can create overwhelm is “should” thinking. This type of thinking involves placing unrealistic expectations on yourself and others. For example, “I should be able to handle everything on my own.”, “I should always be strong for my child.”, or “I should never show weakness.” These types of thoughts can lead to feelings of guilt, shame, and inadequacy.

“I should be able to handle a chemo kid and a toddler,” was a thought that swirled in my head and left me expecting I could be a superhuman parent. When Kyleigh was diagnosed with neuroblastoma as an infant, I juggled chemotherapy appointments, hospital stays, and taking care of my toddler. I believed that as a mother, I should be able to handle everything on my own. But the reality was that it was a difficult and overwhelming time. I was exhausted and constantly on edge, feeling guilty that I wasn’t doing enough for either of my children.

I realized the pressure I was putting on myself was unrealistic. I was placing too much emphasis on what I thought I “should” be doing and not enough on what was practical and manageable. I started to reframe my thoughts and use language that was more compassionate towards myself, like “I would like to handle everything on my own, but it’s okay to ask for help when I need it.”

By changing my mindset, I was able to let go of the guilt and shame that came with “should” thinking. I learned to prioritize self-care and ask for help when I needed it. This allowed me to be a more present and effective caregiver for both of my children. 

Suggestion:

“Should” thoughts can be reframed and this would set more realistic expectations. Instead of using the word “should,” try using words like “could” or “would like to” to express your desires or preferences. This can help you acknowledge that you have a choice in how you approach situations and that it’s okay if things don’t always go as planned. Additionally, it can be helpful to set more realistic expectations for yourself and others by considering factors such as time constraints, available resources, and individual abilities. By reframing your language and setting more realistic expectations, you can increase your ability to cope with challenging situations.

“People Pleasing” Thoughts

“People pleasing” thoughts involve putting the needs of others before your own. As a parent, it is natural to want to do everything you can to help your sick child. However, this can lead to neglecting your own needs and well-being. For example, “I need to stay up all night to care for my child, even though I am exhausted and need rest.” or “I can’t take a break because my child needs me.” These types of thoughts can lead to burnout and feelings of resentment.

As a parent, I was overwhelmed by Kyleigh’s nighttime feeds that required the NG tube. This came from the idea that Kyleigh’s physicians thought this daily ritual was something easy to do. It was overwhelming because these physicians were my colleagues and teachers, and I did not want to disappoint them. Overwhelm was the result of thoughts of not meeting these expectations.

I found myself constantly trying to please everyone around me, even if it meant neglecting my own needs. I would push myself to stay up all night to care for Kyleigh, even when I was exhausted and needed rest. I felt guilty and ashamed when I couldn’t meet everyone’s expectations, even though they were unrealistic.

It took time for me to believe that I needed to prioritize my own well-being in order to be the best caregiver for Kyleigh. I learned to say no to requests that I couldn’t fulfill and to delegate tasks to others when possible. I also allowed myself to take breaks and seek support from friends and family when I needed it.

Suggestion:

Practicing self-compassion and setting healthy boundaries is an important solution to “people pleasing” thoughts. Practicing self-compassion can help you recognize and acknowledge your own needs and emotions, allowing you to prioritize self-care alongside your caregiving responsibilities. It’s important to remember that taking care of yourself is not selfish, and it can actually help you be more present and effective in caring for others. Additionally, setting healthy boundaries can help you manage your time and energy in a way that promotes both your well-being and that of your child. This can involve saying no to requests or activities that you don’t have the capacity for or delegating tasks to others when possible. For example, instead of thinking “I need to stay up all night to care for my child, even though I am exhausted and need rest,” you could reframe this thought to “I can take turns with someone else to care for my child so that I can get some rest and be more alert and focused when caring for them.” By practicing self-compassion and setting healthy boundaries, you can reduce burnout and feelings of resentment and promote a healthier balance between caregiving and self-care.

“Perfectionist” Thoughts

Finally, perfectionist thoughts involve setting unrealistic standards for yourself and others. For example, “I need to do everything perfectly to be a good parent.” or “I can’t make any mistakes.” These types of thoughts can lead to feelings of anxiety and stress.

As a parent, I wanted nothing more than for Kyleigh to live a long and healthy life. However, managing her Type 1 diabetes was not easy, and there were days when her blood sugars were too high or too low. On these days, I would become overwhelmed with the idea that I needed to be a perfect mom to a diabetic child, always maintaining her blood sugars within range. I would blame myself for any deviations and worry that one bad day would ruin her chances of a healthy life. This line of thinking left me feeling paralyzed and unable to take any action.

To combat these perfectionist thoughts, I embraced imperfection. I began to acknowledge that managing diabetes was not easy, and there would be days when things didn’t go as planned. I learned to treat myself with kindness and understanding, recognizing that mistakes were a natural part of the learning process. I learned to celebrate small victories and progress along the way. 

Suggestion:

Self-compassion and embracing imperfection are critical to combat “perfectionist” thinking. Practicing self-compassion involves recognizing and accepting your own limitations and mistakes, and treating yourself with kindness and understanding. This can help you let go of unrealistic standards and focus on progress rather than perfection. Embracing imperfection can involve reframing mistakes as opportunities for learning and growth, rather than as failures. For example, instead of thinking “I can’t make any mistakes,” you could reframe this thought to “Making mistakes is a natural part of learning and growth, and I can use them to improve and become a better parent.” Additionally, it can be helpful to celebrate progress rather than solely focusing on the end result. By practicing self-compassion and embracing imperfection, you can reduce feelings of anxiety and stress and promote a more positive and accepting attitude towards yourself and others.

For parents of chronically ill children, getting organized can be a powerful way to overcome being overwhelmed. Organization of your living space, such as setting up a designated area for your child’s medical supplies, can help reduce stress and make caregiving more manageable. Organizing medical information, including test results and doctor’s notes, using tools such as the advocacy checklist * can also help you feel more in control of your child’s healthcare needs. Additionally, taking time to organize your thoughts and ways of thinking can improve your mental clarity and reduce anxiety. Organization can help you regain a sense of control and reduce feelings of overwhelm. 

As parents, caring for our chronically ill child is one of the toughest challenges we can face. It’s a relentless journey filled with endless appointments, medications, and constant worry. My personal experience has shown that managing the types of thoughts that create overwhelm is critical to navigating this journey effectively. “All or nothing” thoughts, “should” thoughts, “people-pleasing” thoughts, and “perfectionist” thoughts can all lead to exhaustion and despair. However, by practicing mindfulness, self-compassion, and setting healthy boundaries, you can overcome these thoughts and find a healthier balance between caregiving and self-care. Remember that it’s okay to ask for help and that you are not alone in this journey. With support and self-awareness, you can provide the best care for your chronically ill child while also taking care of your own well-being.

*In sharing this link to Dr. Maureen Michele’s site and her checklist, Courageous Parents Network is not endorsing her professional services. CPN has no experience with Dr. Michele in this capacity. The suggestions in the article are based on the author’s personal experience and training, but they are not meant to replace the recommendations of your physician, therapist, or other qualified professional. Please seek the assistance of a healthcare professional for any medical or mental health conditions.

Maureen Michele, MD is an award-winning leader, life coach, author, and physician. As a general pediatrician and allergist/immunologist, she has spent her career caring for patients with a variety of acute and chronic health problems. She is a military veteran and has enjoyed using her story-telling talent to teach young physicians the art of medicine. She is an accomplished life coach who helps parents of chronically ill children regain control of their lives and thrive at fulfillment. Maureen is the mother of three amazing children and has first-hand experience with being a parent of a child with long-term health issues.