The Weight of Staying Well: When Survival Mode Stops Being Sustainable
- SFGC
- 3 days ago
- 4 min read
Living with scleroderma and pulmonary arterial hypertension, along with the tangled gut, heart failure, and other complications they bring, makes keeping up with appointments, medications, side effects, and monitoring a full-time job.
Acute Survival Mode
When I was first diagnosed, I did everything exactly as the doctors said and then some. I measured my blood pressure, heart rate, oxygen saturation, and weight twice daily and kept a record of these measurements. I knew when I would be low on medication and when it was time for prior authorizations by looking at my calendar. This went on for years. My days were filled with monitoring and treating; everything else in my life was secondary. That's how it had to be for me to get better.
Shifting to Chronic Maintenance
Over time, I improved significantly. I let go of one priority, then the next, until one day I realized I wasn’t adding refill dates to my calendar anymore, let alone recording twice-daily or tracking prior authorizations. I still took my medicine when my phone alarm went off and filled my pill cases like clockwork. Every Saturday evening, I put something on the television, grabbed my box of medication, and filled the week-long pill case. I kept up with the endless appointments for tests and various specialists. These remained on my calendar for about a decade.
Burnout
Nowadays, I don’t add items to my calendar until the last minute, when I receive an email or text reminder about the appointment. Lately, I’m lucky if I can get the appointment on my calendar the day before.
For nearly 13 years, my alarm has gone off three times a day, reminding me it was time to take a handful of pills. In acute survival mode, I stopped everything when the alarm sounded. Nothing mattered more. In chronic maintenance, I started turning it off and finishing what I was doing first. “Just a few minutes,” I told myself. Now in the burnout phase, my phone lives on silent. I clear alarms and notifications without thinking, rarely reading them. I don’t take my medications because a reminder tells me to. I take them when I remember, when my chest starts to burn, when breathing feels heavier, when my body signals what the clock once dictated.
I still make sure I take them all. I still space them carefully. But the precision is gone. Evening doses sometimes slide toward midnight because the morning and midday doses drift later than they should. The medication is in the same box I’ve had for over a decade; now it sits beside my bed. I reach in, take what I need, and close the lid.
The Weight
This is not an ideal way to manage chronic illness. But things that once felt responsible now feel heavy, and I just want my life back. I’m mentally engulfed and deeply tired of organizing my life around illness. Monitoring, tracking, adjusting, it never ends. My brain is tired of switching gears all day, from life to illness, from living to monitoring. That constant cognitive switching takes energy. Working memory runs out. Planning ahead feels overwhelming. Even responding to an alarm can feel like one demand too many.
Remembering, tracking, coordinating, anticipating, and predicting the unpredictable is a heavy cognitive load. The threat monitoring, the quiet calculations, the steady emotional restraint, all of it accumulates. The mental checklist never fully shuts off. Vigilance, sustained for years, begins to erode the very nervous system that made it possible. Constant strain and stress break us down; the conditions break us down. Even the medical systems break us down.
I feel like health systems think patients have unlimited bandwidth, as if we can absorb appointments, authorizations, medication schedules, symptom tracking, and emotional regulation without cognitive consequence. What looks like noncompliance is often exhaustion. What appears to be carelessness may be cognitive overload.
High-level chronic disease management is not indefinitely sustainable.
Yet, for a while, I was hard on myself. How can I not be on top of everything when I live with conditions like these? I wondered: What’s wrong with me? Then it hit me.
Survival mode was not meant to last forever.
I’ve not given up.
What I need isn’t stricter discipline.
I need to reboot.
Fighting the disease is one thing, but fighting the life that accompanies these illnesses is a never-ending stressor. I need to give my mind a break. I need to reset and come back to disease management refreshed.
I’ve asked my family for help for the next month. One person will order my medication and fill my weekly pill case. Another will make sure I am aware of my appointments and help me schedule follow-ups. Another will help me stay on top of answering messages with my medical teams and asking questions when they arise, as things tend to slip through the cracks if I don’t stay on top of everything.
Letting go
If I can loosen my grip without guilt, it will be the first real medical mental respite I’ve allowed myself in 13 years. I can’t fully imagine not doing the juggling, but I believe my mind will settle. I hope to regain some of the calmness I once had.
It’s a relief to understand why I haven’t been managing things the way I once did. I feel like I can finally let go of the guilt and move forward with a positive mindset.
If you’re struggling, you are not alone!
Who could you tag in? Please ask your family, friends, or even your medical team for help. We do not have to carry the weight of staying well alone.
Jolie is a rare-disease and invisible-illness advocate who blends lived experience with a clinical background to shift how medical professionals and the public understand patient reality. Living with systemic sclerosis (scleroderma), pulmonary arterial hypertension, and heart failure, she brings a grounded, human lens to resilience and redefined success. She is the founder of Breathtaking Awareness, a digital platform and resource hub dedicated to rare-disease advocacy and clear, compassionate education on pulmonary arterial hypertension.
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Resources
If any member of your support team would like to connect with other caregivers, we invite them to join our caregiver support group. Meets on the first Monday of each month at 8 pm CST. https://www.stopscleroderma.org/support