Guest Post: Part 1, Defining Terms

How we talk about recovery matters

Today we have a wonderful guest post by Brandon. Brandon is not a medical or psychiatric professional: he’s someone who also recovered from long covid and wants to share his personal experience and the science he learned along the way in the hopes of helping others recover as well. 

Ironically, the recovery approach I shunned the most is the one that proved to be the most effective for me. 

For the first two years of being sick with Long Covid, I refused the idea that there was any psychological component to LC. This was rational and understandable. I’m sympathetic to myself for thinking it was absurd. Before sharing my story and some observations on what are generally referred to as the brain, the body, and the nervous system, I want to affirm you aren’t crazy for thinking that the suggestion long covid has a psychological component is crazy.

Let’s begin with the term ‘psychosomatic.’

Psychosomatic is often deployed by medical professionals when they are trying to politely dismiss long covid as not being a real medical issue. The Oxford Dictionary defines psychosomatic as “illness caused by stress and worry, rather than by a physical problem such as an infection.”

The examples cited, headaches and stomachaches, are commonly accepted psychosomatic symptoms. We’ve all experienced these when under too much stress. But I would bet that before long covid you never experienced crippling exhaustion, swollen lymph nodes, muscle spasms, and sensitivity to noise when experiencing stress. 

Doctors often blithely toss around the term psychosomatic, whether on social media, in your medical notes, or in face-to-face meetings, when they want to dismiss long covid. We’ve all heard, whether directly or indirectly, that our symptoms are all in our heads. While this is a misunderstanding of psychosomatic illness, it’s the generally accepted usage, even among medical professionals. 

“You’re just stressed. Get some rest.” 

“You need to relax. Have a glass of wine tonight, and try to stop worrying so much about how you feel.”¹

But as we know, the symptoms of long covid are highly varied and intense. The headaches and GI problems, among all the many others, are orders of magnitude worse than any symptoms of stress we’ve previously experienced.

Some medical professionals, with genuine sympathy, I think, have taken to using a more polite term, ‘biosocial stress.’ To simplify, this term is based on the concept that individuals are born with different levels of emotional sensitivity. When people who are genetically disposed to higher than average emotional sensitivity encounter what are called “invalidating environments,” in which their emotions don’t have room for self-expression, they develop psychological pathologies or personality disorders. It's like a new spin on Jung’s theory that some individuals were born with an innate neurotic tendency, that their libido, or psychic energy, experienced more difficulty adapting to the challenges and stressors of life than the average person. His theory was based on even older concepts from the 19th century. 

While biosocial stress is real, when it’s suggested to be the cause of long covid, whether intended or not, it seems to inadvertently promote the idea that long covid patients are essentially hysterical, that the symptoms are driven by being more sensitive to aches and pains, and psychosomatic symptoms than ‘normal,’ healthy people.  

Like the term ‘psychosomatic’, biosocial stress does point in a direction we need to follow, but these words embody an overly simplified understanding of how the brain interacts with the various systems of the body. More often than not, they are used to discount patient experiences and let doctors off the hook for finding a solution to long covid. They can also imply that patients may simply be depressed. As someone who has suffered from depression, I can relate to the experience of not wanting to get out of bed, but I never had to summon the energy to leave bed, then feel like I was coming down with a flu when walking around my apartment. 

These terms also act as a barrier to research, prematurely cutting off exciting avenues of exploration and reinforcing existing prejudices. 

What is universally frustrating about these diagnoses is that they are often thrown around with no solution beyond the suggestion of seeing a therapist. They also fail to grasp the severity of symptoms experienced. Have you ever been so stressed out you literally didn’t have the energy to get out of bed? Me neither. 

While it’s easy to be upset by these diagnoses (what do my repeated infections have to do with stress?), they show that among most patients and medical professionals, there’s a lack of knowledge about the advances in understanding and treatment options for illnesses that blur the boundaries between the brain, the body, and external agents.

Consider, for example, how these two different scenarios feel.

Imagine you come to your doctor to find out why you are experiencing such horrible symptoms following a Covid infection. After taking notes, perhaps seemingly uninterested, your doctor says, “This sounds like a bad case of stress. I recommend taking it easy and maybe looking into therapy.”²

Now imagine that after sharing your list of symptoms, your doctor nods and says, “This sounds like a neural circuit disorder. What’s likely happened is that the virus triggered an overreaction from your brain, which in turn affected your immune system. The level of inflammation your immune system triggered to stop the virus may have put more pressure on your nervous system than it could handle. As a result, your autonomic nervous system probably isn’t functioning properly. Your ANS controls all the practical functions in your body you usually don’t have to think about, like digestion, breath, and blood circulation. This is probably why you’re experiencing so many different symptoms that seem unrelated. You may be experiencing over-activity of the neuroendocrine system as a result. Taken together, this breakdown in communication between your body and brain could be leading to a dysregulated immune system that isn’t working as it should. Factoring all that in could explain why you feel so bad.³ We’ll need to run tests to make sure you aren’t suffering from organ damage or any other issues, but I’ve seen this in the majority of patients who come to me with similar complaints. The good news is this is a treatable condition. Since the nervous system interacts with the brain, it’s subject to the effects of neuroplasticity. That means we can change how your brain responds to the data it receives and sends out. So basically, we need to get your brain and body properly communicating with each other again. My office will share a list of resources to look into, and we’ll put you in touch with a therapist who specializes in using the latest techniques to help you. We still don’t fully understand how all of this works, but she’s been helping so many patients recover that we think it’s a promising treatment option.”

That would have been a lot to process, but it would give me so much more to work with than the most common responses I received from doctors: 

“We don’t understand. This is a new disease” 

“Based on what we know about previous post-viral illnesses, you may be sick for life.”

“Have you tried walking more often?”

You may have noticed I used the word “probably” and several other suggestive, rather than affirmative modifiers, during the second doctor visit. This is to recognize that the model and methods discussed here may not apply to everyone with long covid. My reading of and understanding of the Lake Tahoe CFS outbreak in the 80s suggests there may be a viral component to some of these illnesses we still don’t understand. But given how well the majority of people who have long covid have responded to the approaches we’ll be exploring, I think it’s the best place to begin. 

Contrary to popular opinion and criticism, there are many no- to low-cost therapies available, all of which are safe no matter how severe your symptoms are. For those with the resources, I think healing can be accelerated when working with a therapist, and is possibly a better investment than many of the courses available, but this topic can be discussed in detail later. I don’t earn income offering any of these therapies, nor do I plan to, so please refrain from that ad hominem.  

I’ll say more later, but if you’re curious about the intersection of stress, illness, and the brain, it’s worth looking into the field of Psychoneuroimmunology. I’ve only read an abbreviated version of the book, but 

BREAKTHROUGH FOR CFS, ME, AND FIBROMYALGIA: How Neurobiology and Epigenetics Point the Way to Recovery. Volume 1 Chronic Neurosomatic Illness

is written by a research scientist, Dr Judith Maizels, who suffered from ME for 25 years before recovering using a psychoneuroimmunological approach that employs several frameworks and therapies I found helpful in my own recovery. 

To bring it back to where we started - If you think back to the theory the 2nd doctor shared, or flip browse through the contents section of the above book, would you use the term ‘psychological’ to describe her suggested cause of your illness? It’s not the first word I would use. This is the challenge with long covid and similar illnesses - our common language and understanding of how the brain and body interact aren’t in sync. 

Over my next few posts, I’ll explore these ideas in further detail. I’ll share a little of my background and a few highlights from my journey. I hope that by beginning to address common misconceptions around the suggestion this illness is “all in your head”, you can step into recovery much faster than I did, and without the same baggage I carried.

1. Actual comments from doctors to long covid patients.

2. They can’t even give you a firm suggestion to get therapy! They probably know your insurance won’t cover it anyway.

3. An imperfect summary, but helpful to get us started.