How You Can Advocate for People with Chronic Pain

By Kevin B: For More Info, Go Here…

No one wakes up and says, “I hope I get to live with chronic pain. That would be so cool!”

That’s because a chronic pain feels like a nightmare. A relentless, inconsiderate, grueling nightmare. People with chronic pain already know this. Chronic pain is pain that lasts for at least three months, and some people suffer for years.

My chronic pain arises from a chronic illness, erythromelalgia (EM). I experience intense burning and pain in my legs, feet, hands, and ears. This disease also causes my extremities to turn bright red and purple.

Every person with a chronic pain is unique, but here are a few factors I consider every day.

EM greets me first thing in the morning, even if I slept through the night. I scan my body to determine if the pain will allow me to stand. Some days I can’t shower, and other days I need rest after I showering. I am on disability because I am unable to work, but am I strong enough to do some housecleaning? Can I go for a walk? How far? Do I need help getting to the restroom? Can I sit up for a while, or do I need to lay down? Will I become addicted to my pain meds, and will people look askance at me if they learn I need those meds?

Is there hope?

I am finding hope through self-advocacy.

1. Advocate for Self-Compassion

Chronic pain is not a moral failing, and neither is seeking relief. I remind myself that my body needs me to care for it. I cannot require my body do more than it can do, and there is no reason to feel guilty. I do not feel ashamed for not being able to fly. Why should I feel guilty when I cannot walk or when I need meds? Coercing my body to go on a forced march is neither wise nor kind.

2. Advocate for Understanding

Telling others about my pain is reasonable. I need other people to help me make it through the day, and the level of help changes frequently. I have to find the courage to advocate for myself with my family, friends, and medical care team. People can’t help me if they are unaware of my needs. A friend told me that I’m not complaining; I am witnessing to my experiences.

And more…

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