Between us, we bring two perspectives to chronic illness: personal experience with prolonged COVID, and clinical and research experience in chronic illness rehabilitation.
Both have taught us the identical thing: When symptoms are real, intractable, and difficult to clarify, patients need greater than reassurance that the tests are normal. They must be trusted, rigorously assessed and offered ways to make sense of what is going on of their bodies.
One of us, Sarah John, knows this personally. Before developing prolonged covid, she was fit and healthy. As a professor of health and physical activity, his life was dedicated to helping people understand and improve their health.
Then he fell in poor health.
For two years she could barely make it Function. At his worst, he couldn’t stand for greater than just a few minutes. Everyday life shrank around the extreme and terrifying symptoms. Like many individuals living with COVID for a very long time, Myalgic encephalomyelitis/chronic fatigue syndromeoften abbreviated to ME/CFS, Chronic Pain and Other Chronic Conditions, he sought answers. There were scans, tests and consultations. Again and again, the outcomes got here back clear. Still the symptoms continued.
That similarity may be devastating. When the body seems like it’s screaming for help, normal test results can feel less like reassurance and more like giving up. The more medicine struggles to clarify symptoms, the more patients may fear disbelief.
Education of the Nervous System
For a long time, individuals with poorly understood conditions have been told that their symptoms are: “All in Their Heads”. This phrase has done loads of damage. It has been used to rule out pain, fatigue, dizziness, shortness of breath, weakness, sensory sensitivity and cognitive symptoms which can be real and disabling.
But modern science tells us to think more rigorously. The nervous system is an element of the body. The brain is a physical organ. It interacts with immunity, hormones, respiration, cardiovascular control, pain processing and stress response. When we talk concerning the nervous system, we’re talking about biology.
It’s long been related to COVID because some people develop symptoms related to it. Autonomic Nervous System. It regulates functions like heart rate, blood pressure, respiration, digestion and sweating. When it is not working properly, people can experience dizziness, palpitations, shortness of breath, fainting, exercise intolerance and brain fog.
Long are COVID and ME/CFS. Complex and varied situations. Some people could have organ damage, autonomic dysfunction, changes within the immune system or post-exercise disorder, when symptoms worsen after even mild physical or mental activity. Other causes and processes within the body are still being investigated. Medical evaluation is mandatory when symptoms are latest, changing, or severe.
Within this broader picture, regulation of the nervous system is usually a a part of recovery for some people. After illness, injury or prolonged physical stress, our systems that detect danger and protect us can change into more sensitive. The body may remain on high alert after the actual threat has passed or subsided.
One solution to understand that is to assume a house alarm system. A well-calibrated alarm responds to an actual intruder. A highly sensitive alarm goes off when the wind moves a branch against the window. The sound is real. The pain is real. The problem is the brink.
For Sarahjan, it helped. That didn’t make his symptoms any less real. It made them less afraid. Instead of fighting each symptom in isolation, he began to know how his body’s immune systems were contributing to the general pattern. She could work together with her body’s limitations as an alternative of pushing against them.
This understanding is central. Second arrow: Change Long COVID, a program we developed to assist people living with persistent symptoms. In a small preliminary study, participants learned how the brain and nervous system can contribute to ongoing symptoms, and got practical tools to administer every day life with prolonged COVID.
Participants described the stress of living with symptoms they might not explain and that medication had yet to account for. They also described the relief of being offered a framework that took their symptoms seriously while giving them practical ways to maneuver forward. One participant said the course “gave us hope” and “showed us a way”.
For someone living with persistent symptoms, hope is not any small thing. But it needs to be honest hope: no promise of a cure, no suggestion that recovery depends upon positive considering, only a careful way of constructing the illness seem less terrifying and fewer unimaginable to live with.
This method is just not a cure. It is just not an alternative to medical investigation, diagnosis, pacing, medication, social support or specialist care. It should never be used to inform people to alleviate symptoms. For individuals with Post-labor anxietydoing an excessive amount of could make symptoms worse, sometimes severely. Any recovery method must respect individual energy limitations.
Used cautiously, nevertheless, nervous system education may occur A recovery tool. Recovery may include body-based approaches corresponding to respiration, rest, pacing, leisure, symptom monitoring and punctiliously tolerated movement. It can even include strategies that work through attention, interpretation, fear, planning, and trust. These approaches recognize that thoughts, emotions, immune responses, pain pathways, and physical symptoms are a part of a biological system.
Not every little thing is in your head.
Patients have a right to be cautious when explanations involve the brain or nervous system. Many people have been told to come back out of apostasy, unbelief or illness.
But patients are usually not served well by dismissing mind-body science altogether. The nervous system is an element of the body. It may be injured, sensitive, overloaded and, in some cases, supportive of change.
Persistent symptoms are real, biological, and infrequently passive. For some people, understanding the nervous system can offer a practical solution to manage symptoms and improve quality of life.
People living with long-term COVID, ME/CFS and other chronic illnesses need no more arguments about whether their illness is physical or psychological. They need careful assessment, respect, support, research and treatment approaches which can be honest about uncertainty.
Most of all, they need health care that does not quit when the test comes back clean.