Symptom Normalization and The Harm That It Brings. Debilitating Fatigue is Not "Being Tired." So Why Do We Say It is?
How many times have you said "I'm so tired from yesterday" or "that light gave me a headache" or "I'm too tired to go out today"? Probably a lot. In fact, regardless of chronic illness status, these are common things to say. But for those of us with severe fatigue or migraine, these sentences can be deceptive. While they are common things that are easy to say in the moment, in the long run, they may harm our friends' and families' understanding of our disease.
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Symptom normalization
For those of us with frequent severe symptoms what happens in these circumstances is that abnormal and severe symptoms are normalized to make those around us feel more comfortable. Saying you have severe fatigue, excruciating muscle and bone pain, or a terrible migraine makes able-bodied people very uncomfortable which can push us to use terms people are more comfortable with like "tired" and "headache."
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The problem
The issue is that when you say "I have to lie down I have a headache" instead of "I have an incapacitating migraine I am unable to leave the bed right now" people will compare your state to headaches they have. The average person's headache is a 2-3 on the standard 10 pt pain scale, for migraine sufferers 8 is normal. These are not comparable experiences. Similarly with fatigue being called "tired" or Post Exertional Malaise (PEM) being "tired out from _____" these phrases encourage people to compare our experiences to their own which in turn leads to more misunderstanding about just what we are suffering.
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Specific language
While it is true that many people do not know fatigue is not just being tired, PEM is not just fatigue, migraines are not just headaches, and so forth when we fail to use the proper language for what is happening to us we encourage those misunderstandings. Unless we use a specific language for what is happening to us, we cannot truly fault our loved ones for misunderstanding. When we say fatigue and migraine and PEM regularly we encourage people to learn about what those terms, and thus our symptoms, really are.
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Why it happens
So if there are so many benefits to using a specific language why don't we all do it? I feel there are two main reasons:
-Not wanting to be "dramatic"
-Internally normalizing our experience
Both of these reasons push us towards wanting to be "normal" either by outwardly being seen as normal in society or inwardly normalizing our symptoms to feel less sick.
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Not wanting to be "dramatic"
This is the side that is most reinforced by society. People's misunderstanding of chronic illness leads them to believe that "things can't _always_ be that bad." This false belief often presents as skepticism against anyone who reports severe symptoms "too often." The reality of a diagnosis like chronic migraine, fibromyalgia, or MECFS is that most have severe symptoms daily. But it is common that patients will be told things like "you can't just call every headache a migraine" even if that person is having migraines every day. This may push people to call things by more common complaints so as to not be seen as "dramatic" even if they are fully aware of the actual symptom they are experiencing.
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Internally normalizing our experience
This is most common in patients who got sick at a young age or have been sick a long time. Over years of ableism and gaslighting or by never having a symptom validated throughout childhood, people can be misled that a severe symptom is actually a normal thing to experience. For example, a kid who experiences undiagnosed migraines may simply believe that everyone who says they have a headache is feeling what they feel and they are just weak in resisting it. This is incredibly tragic and is why we should always take impairment by symptoms seriously even in people who do not see their symptoms as severe.
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Your impairment is valid
A crucial thing to remember in fighting symptom normalization is:
It is not normal to be impaired by your symptoms and normal symptoms do not cause functional loss.
What this means is, if you are physically unable to do something because of your symptoms that are not normal and should not be normalized. Using specific language for these sorts of functionally impairing symptoms is crucial to making sure others understand that you are not being lazy or weak, you are facing something different. While it is also important to acknowledge severe symptoms when we are still able to work through them, functional impairment is a powerful alarm bell for when a symptom has definitely moved beyond the capture of everyday language.
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Avoiding symptom internalization
Finally, it is important to avoid symptom normalization because if you get too accustomed to not defending and clearly articulating your symptoms you may begin to internalize them. That is to say, you may begin to struggle to separate what your symptoms cause you to do and what you choose to do. For example, instead of being aware that your severe fatigue keeps you from going out, you may begin to believe you are an asocial person. This can be very harmful to your mental health, especially if you blame yourself for the effects of your illness and begin to identify as lazy, a hypochondriac, or stupid. In contrast, practicing using specific language to articulate symptoms helps us to remember why we can't do certain things and just how much we battle every day.
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Following on from not calling Myalgic Encephalomyelitis or #MECFS by the name Chronic Fatigue Syndrome here is why we need to call symptoms like arthritis, fatigue, migraine, depression, PEM and so on by their proper names too.
Just like how I do not blame CFS patients for their label I don't believe that people calling symptoms by less accurate names like tired, headache, sad, or tired out are to blame here. Many patients do not know the technical terms for their conditions. Many others are simply conditioning their language in order to adapt to the society and ableism around them. As before, more marginalized groups are more likely to have their symptoms minimized and in turn end up participating in or living with symptom normalization.
Note there are two sorts of symptom normalization, normalizing an accurately described symptom in a society like normalizing mental illness or normalizing an inaccurate reflection of a symptom to minimize it like a doctor telling their patient with chronic migraine that "everyone has headaches" the first is generally positive whereas the second tends to have a negative effect.
In particular, this post explores why it is that patients themselves normalize their symptoms. Obviously, a doctor who cannot help or diagnose a symptom has an incentive to normalize it in order to minimize their failings. But why would the person suffering the symptom want their symptom to be minimized?
We can normalize symptoms externally when we want to be seen as normal around healthy friends. Whereas people get lost and overwhelmed when you say you suffer terrible migraines daily when you say you have a headache people nod in sympathy.
Additionally, years of ableism or gaslighting can us to normalize symptoms internally because we don't feel confident in our diagnosis or disability. This is similar to not wanting to identify as disabled because you don't feel "sick enough."
But when we normalize our symptoms we minimize the reality of living with chronic illness. As long as we refrain from describing Chronic Pain and Chronic Fatigue the people around us will never learn.
