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Adjusting to Living with ME/CFS and Long-COVID
Coping with the personal, mental and emotional aspects of living with these illnesses.
Disclaimer: This page shares thoughts and ideas from patients and caregivers. For medical or other advice, speak with your healthcare providers.
The personal, mental and emotional experience of living with a complex chronic illness can be as hard as the physical.
The process to find supportive healthcare can be frustrating, and the unstable, uncertain and debilitating nature of the illnesses can cause anger, fear, and confusion.
No one has an answer for how to handle living with ME or Long-COVID. But one lesson from our community is that it is probably not going to be a linear journey “from diagnosis to acceptance.”
Living with these illnesses is often an ongoing effort, with negative feelings always in tension with ongoing positive efforts to adjust and cope.
“I keep thinking I’m doing OK and adjusting to my new reality, then I have a bad day and feel angry and jealous. Then, by next month, I am kind of doing OK again.
Nothing makes it “OK,” but there are things I can do, people I can talk to and ways I can think that can make it a bit better”
-A long-COVID patient in Vancouver
These illnesses impact patients’ lives profoundly and the experience each person has over time should never be trivialized by suggesting that specific actions or techniques will magically make life rosy.
But, in the section below, we have gathered ideas from our community that may help make things a little better and bring you an improved quality of life.
Things that May Help
No one thing works for everyone – Find out what works for you.
Be Kind and Gentle with Yourself
Finding ways to manage your illness, acknowledging the real losses you have experienced, and reaching out for both practical and emotional help when needed are all critical to adapting to life with these illnesses.
However, many people with ME/CFS or Long-COVID continue to struggle with their very real limitations.
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If you remember to be kind and gentle with yourself, and see if any of the ideas here work for you, you may discover new joys, uncover strengths you didn’t know you had, develop new friendships, find purpose in unexpected places, and find new ways to enjoy favourite activities.
