How You Can Advocate for People with Chronic Pain

Photo by nikko macaspac on Unsplash

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.

Chronic pain often arises as a symptom of illnesses such as rheumatoid arthritis, cancer, multiple sclerosis, or migraine headaches. People can acquire chronic pain through injury or environmental triggers, and others have a genetic link. Idiopathic chronic pain occurs through unknown causes. People with Complex Regional Pain Syndrome (CRPS) or amplified pain have a severe reaction in their body that causes them to feel intense pain.

Sometimes people find relief from medications or physical therapy. Chiropractic care or acupuncture help some people, and psychological therapy and biofeedback bring assistance to others. If you have chronic pain, you should check with your healthcare team before trying any treatments.

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.

Chronic pain is unlike the normal aches that we all undergo. As a teen, I broke my left wrist, but it healed. In the mid-2000s, I sprained my ankle while climbing down Pikes Peak, but I felt better after a week or two on crutches.

Sitting, standing, changing position, walking, eating, and going to the bathroom can exacerbate chronic pain symptoms. That’s why people with chronic pain must perform calculations related to how their bodies might respond to every action.

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?

Then there are mental and emotional consequences. My professional life has disappeared, and my social life has dwindled. I wonder how I can participate in causes that matter to me. Can I make commitments that require me to be anywhere for a definite amount of time? Social media has become my primary venue for human interaction, but this causes a level of worry. If I post too much about my health, will people think I’m whining?

With a chronic pain, it is easy to begin seeing the world as a dangerous place. When moving hurts, more and more you might want to do less and less.

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.

3. Advocate for Activity

Because moving hurts, I sometimes need a metaphorical push. So I have asked my family to ask me to go on walks. I might say no, but sometimes I go when I might not have otherwise done so alone. A couple close friends have agreed to invite me out for coffee once or twice a month. Left to myself, I might stay home alone. Their invitation nudges me into moving; plus getting out benefits my mental health. I know they are thinking of me and my need, but I have to give them permission to do this.

4. Advocate for Hope

Hope is not irrational optimism. There is no cure for my chronic pain, so I am not hoping to be healed. Nevertheless, my body and mind need me to advocate on their behalf so I do not give in to despair. This is not simply mind-over-matter. I cannot think my way into my chronic pain disappearing, but I cannot allow myself become fatalistic. I have had to reassess what I consider a “good” day, and I may never have an entire “good” day again. As an advocate for hope, I can begin to recognize and embrace good moments.

People living with chronic pain are like everyone else. We have joys and sorrows, dreams and disappointments, boredom and elation. Ultimately, we do not want to be treated differently than you, but we do have particular needs that make our lives challenging.

Chronic pain is unique to each person, so people will respond to it differently. If you live with chronic pain, advocate for yourself in ways that only you know. If you do not have a chronic pain, be respectful of the people in your life who do. How can you support them? More importantly, I hope you will understand that they have something significant to offer you.

A former elementary educator with a physical disability. @disabledsaints

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