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Parenting with Chronic Fatigue: One Mother’s Story of Resiliency and Hope

Long COVID, autoimmune diseases, and general economic, emotional and physical stress can make parenting unbearable. I know.

When my husband died of bile duct cancer, I found myself the sole caretaker of a teen son with autism. By that time, I had already dealt with the first bout of my husband’s cancer (10 years prior), and the financial and emotional strain of raising a neurodivergent child in an educational system (let alone world) that was not always welcoming. Huge credit card balances and second mortgages from medical bills and therapies that offered false hope led to my burnout – not just any burnout, though. This was fatigue that I had not experienced before which affected my memory, joints and emotional sanity.

My therapist said I needed to congratulate myself for getting out of bed in the morning. My primary doctor wanted me to lose weight. The orthopedic surgeon recommended knee replacements. The sleep apnea test came back inconclusive because (not to my surprise), I did not get enough straight hours of sleep for the doctor to adequately make a diagnosis. It seemed like every pill each doctor prescribed had side effects that overshadowed what the pill was supposed to cure. Every day, I woke up, got my son off to school, went to work, ordered dinner, got my son ready for bed and tried to sleep. Finally, I was diagnosed with an unspecified autoimmune disease. By this time, any weight I had lost had been regained plus 10 pounds and my asthma worsened. However, there were some treatment options such as acupuncture, nutritional supplements and aqua therapy that eased the pain – sometimes. I wish I could have been more consistent with these options, but money and time always seemed to take precedence.

I have been on an emotional and physical rollercoaster that only parents with chronic health conditions may be familiar with. Some days I cope, but there are still those moments when I am just too tired to care.

On days like that, I ask myself these questions:

  1. Am I and my son safe?
  2. Do we have shelter and food?
  3. Do we have access to medical care?

Answering “yes” to each question reminds me that my basic needs are being met. That’s enough for today.

Also, I think about what is in my control and I remind myself that I have choices such as:

  • Contacting friends who have offered to drop off food or watch my son. (Gradually, I made the difficult decision to put him in a group home because we did not have any siblings or family close by that could help.)
  • Doing physical therapy at home on a massage table instead of going to the PT office.
  • Asking friends for rides when I am too tired or anxious to drive.
  • Doing only one thing on my list every day.
  • Downsizing/selling my townhouse to pay off outstanding bills.
  • Not overextending myself, since that can lead to a flare up of unwanted symptoms and increased pain.
  • Taking proper precautions such as wearing a mask or avoiding crowds.
  • Doing what makes me feel good – like journaling, gardening and listening to books and podcasts.
  • Lowering expectations in order to accept a new reality that takes into consideration my limitations.

The Maryland Pain and Wellness Center offers more tips to significantly improve the quality of life for those living with chronic pain, such as maintaining a schedule, taking rest breaks, talking to your kids so they don’t feel confused and educating your employer.

The dynamic of your relationships may change. Being honest and open about your health can help people understand and react in an empathetic way that may surprise you. Still, some people may not understand. You can tell them that the “it’s all in your mind” theory has been disproven because you have a medical diagnosis.

It’s also important to remember that chronic illnesses are not all the same – each has its own hurdles and progressions. There are many things you can do to improve your health, such as maintaining a healthy diet, holistic therapies, prescribed medications, shots … the list goes on. Since there are varying success rates, you may encounter some frustration. Like much in life, trial and error prevail.

I have not always welcomed these changes. There are times when I am jealous and angry, but I have so little energy, I often choose not to waste it feeling that way. I have also found a tribe of other parents like me who I talk with on a weekly basis for support.

Today my life is simpler. I pray for wisdom and strength. When I feel good, I return the favors that people have done for me. I stay off Facebook. I practice gratitude, not toxic positivity, every day.

For my son’s 30th birthday, I raised some butterflies and we let them go together in front of his house. This made him and his roommate smile. That moment gave me more energy than I have had in a long time.