It’s taking time for me to understand and adjust to my health challenges being chronic. The word comes from the Greek root word “khronos” meaning time. The dictionary meanings are: continuing or occurring again and again for a long time; always present or encountered and especially vexing, weakening, or troubling; being, providing, or needing long term medical care. Two examples given are: chronic illness and chronic pain. Merriam Webster includes a “see also” note with links to: Chronic Disease, Chronic Obstructive Pulmonary Disorder, Chronic Fatigue Syndrome and more. PubMed’s article, “Use Your Words Carefully: What is Chronic Disease?” offers many definitions and indicates the disconnect between professionals as to what defines a chronic condition. Most agree that a condition is chronic when lasting for a certain period of time (three months to a year or longer), cannot be cured with traditional medical interventions, and are slow in their progression.
The idea of me with a “chronic” condition was not something I had remotely considered. How could I have a chronic anything, no less three or four chronic things? How is it possible that I couldn’t magically “positive think” my way out of this? The learning curve continues to be a multi-dimensional and mind-boggling process. The roller coaster aspect of all this, annoying. I have had weeks of feeling really well, only to have symptoms arise from eating bananas, walking too fast or too far, or adding a new supplement. I will have more to say about this aspect in a later post.
Therapeutic treatments that provide relief and improve quality of life are often not covered by health insurance. Naturopaths, Traditional Chinese Medicine (TCM) doctors, functional medicine professionals, massage therapists, and wellness coaches have long provided treatment and guidance for people with chronic conditions. There is usually an out-of-pocket cost for these services. During my years as a massage therapist, I served many clients with chronic conditions. I did my best to provide healing touch and compassionate support as they described being dismissed by medical doctors or disbelieved by family members who expected them to do things that pushed their limits. I now have a deeper understanding of what those clients were going through. It makes me wish I could have done more to support them.
Our healthcare system today, and modern medicine in general, is based on reductionism, meaning focusing on a singular, predominant factor. Long Covid (LC) and other chronic invisible illnesses can involve complex multi-system factors that are impossible to diagnose and treat within a typical sixteen-minute office visit. Complex health challenges often require referrals from a primary care doctor to various specialized physicians. While these services are usually covered by health insurance, there can be snafus with pre-authorizations or coding. There can also be long wait times for appointments due to increased patient load and a shortage of physicians. I count myself lucky to have a doctor on my team to help me juggle the details.
Understandably, people who care about us want to hear that we are doing great, being productive, going places, seeing people, and feeling fit as a fiddle. This is not always possible when living with a chronic condition. Since our capitalistic society at large dotes on ableism and productivity, and thrives on adrenalin, being active is revered. Health emergencies get lots of bells and whistles, even sirens! However, a slowly progressive, chronic illness that makes life difficult, but not impossible. . . snore! No one wants to hear that doing two activities in a day can result in a crash, or that “brain fog” is troubling. Speaking of brain fog, the term vastly understates a brain or neurological injury. But I digress. My point is that chronic conditions are really hard to understand if you’re not living with them, and sometimes hard to understand when you are living with them!
Next time, in the Long Covid series, I will share more about energy ups and downs.
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.
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