Illness Centrality
Illness centrality happens because of life disruption. Not the other way around.
Why "I am not defined by my illness" is flawed.
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Illness centrality refers to how much of your identity is defined by your illness. The affirmation "I am not defined by my illness" is often promoted by practitioners as a way to decrease illness centrality.
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The problem
"I am not defined by my [dehbilitating life-changing chronic] illness" is just plain false. Chronic illness has an undeniable effect on who we are and what we do. So why is this promoted?
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Correlation
Well, studies show that people with lower illness centrality have a better quality of life outcomes like maintaining friendships, hobbies, jobs, mental health, etc. So the theory goes: if we can decrease someone's illness centrality we will increase those other correlated measures.
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Correlation is not causation
The problem here is not that the studies are wrong it's that the theory has it backward. The sicker you are, the more your illness impacts your quality of life. The more your quality of life is impacted by illness the more central that illness is to your identity. The reason quality of life is correlated with illness centrality is because the quality of life changes illness centrality.
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Working backward
Saying that lowering your illness centrality will improve your quality of life is therefore backward. It's like saying not grieving for a relative will bring them back from the dead. Yes, people who grieve for relatives have more dead relatives. But it's not the grieving that caused the death.
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Why it persists
Just like people can be consumed by grief at an unhealthy level, people can have illness centrality to an unhealthy level. Someone with mild ME who spends their whole day focused on trying to heal and never does anything else would benefit from acknowledging that there may be nothing more to do to treat their illness and instead of finding things they can do despite their illness.
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It's all relative
The problem is that there isn't a level of illness centrality that is inherently bad. For example, someone with very severe ME may be completely bedbound and in great pain all day. They would also be focused on their illness all day but for them, it would be necessary to regulate their pain and PEM, not unhealthy.
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A better solution
Instead of telling people to "not let their illness define them" (as the previous example shows it is often not something you "let" happen) or to affirm "I am not defined by my illness" when many people are, we should instead say "live the best life you can with your illness." Or "focus on what you can do." These affirmations would both assist someone who is over-focusing on their illness, but do not invalidate people who have a very low quality of life and/or functioning.
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Have you been told to "not let your illness define you"?
Do you feel "focus on what you can do" is helpful?
Do you think the concept of illness centrality is helpful or harmful?
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Correlation is not causation. We do not "let" our illness define us, severe illness is life-changing. This identity change due to illness is called illness centrality.
The affirmation "I am not defined by my illness" is just not true. We are defined by disability and debilitating chronic illness. "I am not _only_ defined by my illness" would be better, but still ignores people in the midst of severe health crisis where they really do have to focus solely on their health.
The reason this affirmation persists is wishful thinking based on correlation. Healthy people don't have to think about their illness (or lack of). So we hope that not thinking about our illness will make us healthy. But this is like saying happy people are not grieving the death of a loved one. So not grieving the death of a loved one will make me happy. This is clearly false, even if I don't give myself space to grieve I will still be sad about the death of a relative, or at least not emotionally healthy and happy. We cannot make bad things go away just by ignoring them.
Just as with grief, there can be unhealthy levels of illness centrality. When we only fixate on one bad aspect of life, we miss out on other good things. We often lose our identity when we get sick and finding a new identity including and beyond our illness is a great thing to work on in therapy. But by and large, the main way illness centrality is determined is not by how much we think about illness but by how much illness intrudes into our lives. We have little control over decreasing illness centrality and it is far more helpful to focus on increasing our self-confidence and identity including illness instead.
Illness centrality is not a bad thing. Just as grief is not a bad thing. Both are a natural reaction to difficult circumstances. Trying to eliminate either is toxic. Instead, the focus should be on processing and moving forward with these feelings. We are hostile to illness centrality because accepting illness centrality as essential or even positive means accepting illness as chronic. It means accepting that some people are permanently disabled beyond their control. It means accepting the truth ableism denies.
