With chronic illness, empathy and understanding are the best approach
During symptomatic crises, attempts at encouragement can feel like pressure
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One of the hardest parts of living with chronic illness is being misunderstood in moments when I have the least energy to explain myself.
With multiple sclerosis (MS) and postural orthostatic tachycardia syndrome (POTS), sometimes my heart rate skyrockets, my body overheats, my energy drops, my nervous system screams at me, or I lose feeling in one of my legs. During those moments, I have to calculate whether I need to lie down to lower my heart rate, drink water or electrolytes, relocate to a cooler temperature, reduce stimulation, or simply take the time to rest and reset. An outside observer might not notice or understand any of this.
Living with MS taught me that a person can look outwardly fine while feeling anything but that. Cognitive fog, fatigue, pain, visual disturbances, and other sensory changes can hide in plain sight. When my autonomic nervous system is struggling due to POTS, I may not look sick in a way that makes sense to someone else. I might need to lie down immediately or invert myself to slow down a racing heart rate and account for quickly dropping blood pressure before I pass out.
When I become quiet or withdrawn, people can easily misread my intentions. They might want me to laugh, engage, and participate like my “normal” self, believing I need encouragement, distraction, or movement.
Granted, sometimes distraction does help, and sometimes I do need to remember that I am not my disease. But most of the time, the problem isn’t that I’ve forgotten how to live, but rather that my body is working in overdrive to stay regulated. It’s not asking for more energy, but rather fewer demands.
In those moments, encouragement can feel like pressure, asking me to look better before I feel better. When I’m symptomatic, I can’t downplay it to make someone else feel comfortable. That’s the difference between encouragement and pressure. I have to determine whether I can safely continue what I was doing or whether pushing through it will cost me later. It’s not helpful if someone responds to that with other expectations.
What I often need is simple, but help can be hard to ask for. I might need a quiet room or a cool place to sit down. It’s taken many years for me to learn to say, “I need less stimulation right now” without worrying whether it sounds like rejection to someone else. If I say, “I can’t do that right now,” that should be enough.
Support doesn’t always need to motivate or redirect. Sometimes statements like “Take your time,” “Do you need quiet or company?” and “I believe you” can work wonders.
I’m still myself when I’m quiet. I’m still making an effort when I’m resting. And I’m still living, even when my world becomes smaller for a while.
Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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