Chronically ill people don't "get used to it". Here's what really happens.
A Convenient Myth
There is a convenient myth that chronically ill people "get used to it." That a chronically ill person in pain isn't suffering the same as you would be in that circumstance because they've "adjusted."
This is used by medical practitioners to justify denying symptom management to chronic illness patients because "The problem is chronic you could never stop the medication. You just have to get used to it."
But you never "get used to" severe pain. You never "get used to" bone-crushing fatigue, or miserable nausea.
Here's what "getting used to it" really means...
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When you say we "got used to it" we really
-Stopped attempting things we know are impossible due to our illness
-Made our life smaller to deal with symptoms
-Accepted our illness because we have no other choice.
-Stopped articulating our pain and symptoms because we know it won't lead to help.
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When we "got used to it" it doesn't mean
-It got easier
-It got less painful
-It got less disruptive
-We don't still need help
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We didn't get used to it.
We became numb to trauma.
We gave up on getting help.
We learned to survive because we had no other choice.
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Not to mention the many who tried to self-delete because they couldn't "get used to it" and are only here because they failed.
Not to mention the many people who are gone and will never "get used to it."
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Chronic pain kills.
Neglect of chronically ill patients, lack of palliative care, lack of CARE kills.
Chronic pain patients are 5x more likely to die by their own hand.
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We don't "get used to it."
We get used to being dismissed, neglected, and ignored by medical professionals and society.
We get used to living tiny lives bound by our broken bodies.
We get used to pasting together the shattered pieces of our lives, over and over again.
We get used to surviving the unimaginable and the unbearable.
But we never get used to the symptoms, the pain, and the longing for life beyond our beds and walls.
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We don't "get used to it."
You get used to our suffering.
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Read more by @katie_andm.e
This post was inspired by Katie's amazing recent post "You never get used to it..." Please head over to her account to check it out.
Katie is an incredible young woman and writer with very severe ME. Her kindness and persistence in making her voice heard despite severe personal suffering is deeply admirable. Her account details so many of our day-to-day struggles as well as offering insightful perspectives. I highly recommend it!
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We don't "get used to it." Not in the way you think we do.
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Living with Myalgic Encephalomyelitis means living with constant pain fatigue and malaise. Imagine how you felt when you had the flu. The aching the sickness. That feeling never stops.
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People think that we "get used to" our illness because we keep living. But when your choice is between living with severe suffering or death it isn't much of a choice at all. Even still it is one that many cannot bear to make with approximately 20% of person with ME dying by their own hand.
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The idea that people with chronic illness must "get used to it," does nothing to help people understand what it means to live with these diseases. But it is eminently convenient for denying us access to symptom Management and palliative Care.
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In order to feel better about the neglect of chronically Ill patients doctors and communities perpetrate the myth that we must "get used to it" that it must get easier with time.
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There is a truth to the fact that we do "get used to" feeling terrible. But we do not feel less terrible. We simply layer trauma, dissociation, and acceptance of our suffering. We do this because it is necessary to survive.
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But we never stop needing help. Needing pain Management. Needing care. Needing to be seen as humans whose suffering is worthy of relief.
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Accepting our illness is not giving up. But so often people with MECFS have no choice but to give up. Not at living with illness but at fighting for dignity, fighting for the medical support we deserve. Because what can you do when you barely have energy to survive and make it to someone to ask for help only to be told that you just need to "get used to it."
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If someone has pain, nausea, insomnia, anxiety, depression, executive dysfunction, sensory sensitivity, mobility limitation, or any of the other barage of symptoms that come with being ill they deserve accommodation and whatever relief is possible. Regardless of how long it lasts.
