Have they got better or…
Have they got better or...
Have they just got better at hiding it?
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Have they got better or...
Have they just got better at coping?
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Have they got better or...
Have they just got better at pushing through symptoms?
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Have they got better or...
Have they just stopped asking you for help?
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Have they got better or...
Have they just stopped brining it up?
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Have they got better or...
Have they just learned they can't be vulnerable in front of you?
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Are they better? Or have they just gotten better at
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-Coping
-Hiding it
&
-Knowing who to trust
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Coping with MECFS Chronic Pain and Chronic Illness is super important. But for those who do not live with these diseases it can be easy to mistake coping and hiding our invisible illness for legitimate improvements in health.
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Improvements in pacing and managing Myalgic Encephalomyelitis can lead to massive improvements in productivity and even quality of life.
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But it doesn't change the fact that this illness is incurable and that the symptoms pain and constant mental work of management are a full-time job.
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People see that you went back to school, or that you are writing, creating, modeling, going out, running a shop etc. They don't see everything you sacrifice to make that 1 priority happen. They don't see the loss of social life, other hobbies, mental health. The normalization of severe symptoms and pain.
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For those with severe ME people see you "doing better" looking like you have fewer symptoms, not talking about your illness so much. But they don't realize that your symptoms only improve if you carefully regiment every aspect of your life to control them. That many symptoms don't improve at all, we just stop mentioning them.
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Your value is not your productivity. But we live in a society where it is so often seen this way. Where being chronically Ill is seen as a character flaw to be hidden as opposed to a burden that spoonies carry the vast majority of.
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If you know someone who is chronically ill and they talk to you about their illness that is a mark of trust. It shows vulnerability.
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If you know someone who is chronically ill and they never talk about their illness, don't assume its because its gotten better.
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Not every time someone with ME / CFS hides their illness is because we don't feel safe. But it so often is. The internal value of hiding how you feel is small, the external value is large.
