Letting go of control is challenging in life with a rare disease

When health issues strike, they can be devastating, turning your world upside down in an instant. You can’t just wish away a rare disease like pulmonary hypertension (PH); its future impact is a daunting unknown.

Last week, I had an “aha!” moment with my young adult daughter, Kayla, in the kitchen. She had plans to go out, and I was left juggling household tasks. Feeling overwhelmed and anxious, I clattered noisily as I cleaned. In that moment, amid the chaos, I realized how much living with PH affects me daily.

My daughter, now living with me to help after my last hospitalization, quickly recognized my overwhelmed look. When she asked why I was so stressed, I broke down and cried. “I need help, but I hate asking for it,” I admitted.

She asked which tasks needed doing. Without thinking, I rattled off washing towels, cleaning the pantry and fridge, and resting before making dinner later. With a concerned look, she asked why these tasks had to be done now. I explained that my to-do list would become unmanageable by Friday if I kept pushing them off. She assured me that some things are out of my control, and that’s OK. Her understanding, willingness to help, and warm embrace encouraged me and reminded me I’m not alone.

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Balancing control and acceptance

While her response wasn’t what I wanted to hear, it was enlightening.

As a type A personality, I crave a schedule and predictability; it’s how my brain works. Knowing and planning have always benefited me, even before I had PH. Unfortunately, the constant ups and downs of managing an unpredictable disease have forced me to work on going with the flow.

I’ve realized I don’t control my health, so I seek control in other areas. I work better when things are organized, but sometimes my emotions and disease take over. If it’s not PH, it’s my chronic kidney disease, which often causes issues with my lab work and leads to challenging days.

This realization empowered me to find a balance between control and acceptance in my life, despite the unpredictability of my disease.

I’ve found that isn’t unusual for many who manage rare conditions. Mark Harrington, a patient columnist for Myasthenia Gravis News, recently wrote about this topic. In “Navigating uncertainty in life with myasthenia gravis,” Mark shared that he’s learning to keep moving, despite his affinity for predictability. As I read his column, I related to many of his struggles as a retired teacher.

Letting go and accepting help

My daughter insisted I get dressed and join her at a coffee shop for an hour, promising she’d later spend 15 minutes cleaning the pantry and refrigerator. Though she wouldn’t do it my way, I reminded myself that her help was valuable. I agree when she tells me to let go and says that it’s OK for our home to look lived in, even though my brain craves organization. This short break made me feel prioritized and cared for, reminding me of the importance of self-care amid the chaos of managing my disease.

PH makes it challenging to lead a “normal” mom life. But there is no “normal” mom. Our lives change constantly as our children grow. Kayla has seen me in the hospital many times and never questions my need to sit for a few minutes or rest. Without realizing it, I created this caring and resilient daughter. My medical flaws helped shape her, and I’m incredibly proud of the adult she’s become.

Letting go and not being in control can be especially difficult for those with PH and other rare diseases. The fight for control over our body and health often spills over into other parts of our life, leading to stress and exhaustion. We must ask ourselves: Is maintaining control worth sacrificing our well-being?

Have you faced a similar struggle? How do you do with setting boundaries, giving yourself grace, and accepting help? Please share your experience in the comments below.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.