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How I Explain My Pain to People Who Don’t “Get It”

Real Talk

August 30, 2022

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Rob and Julia Campbell/Stocksy United

Rob and Julia Campbell/Stocksy United

by Stefanie Remson

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Deborah Weatherspoon, Ph.D., MSN

Medically Reviewed

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by Stefanie Remson

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Deborah Weatherspoon, Ph.D., MSN

Medically Reviewed

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Pain is different for everyone. The same type of pain may affect different people differently, which can make it hard to explain to others.

Anyone who has ever experienced pain thinks they know what pain is. They have felt pain — therefore, they feel they understand what other people with pain are experiencing.

But if you live with chronic pain, you may share in my frustration.

It’s nearly impossible to understand what it’s like to live with chronic pain without experiencing it firsthand. If you do struggle with chronic pain, you know the pain can last months to years. Chronic pain changes lives.

Some people with chronic pain can’t even remember living a single day without it. This can make explaining your pain to someone who doesn’t understand both frustrating and challenging.

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Understanding chronic pain

According to the CDC, about 20% of U.S. adults lived with chronic pain in 2016.

The effects of chronic pain are great. The CDC reports that chronic pain can lead to disability, medication dependence, lower quality of life, and higher rates of depression and anxiety.

Pain is different for everyone. In this TEDEd talk, the narrator explains how your brain responds to pain.

The same type of pain may affect different people differently. This further complicates how to talk about it with others.

Chronic pain is different from acute pain. By definition, chronic pain is pain that’s lasted for more than 6 months. Acute pain is pain that occurs for shorter periods of time, typically less than 3 to 6 months. For example, a broken bone or pain after a surgical procedure. Chronic pain, however, is with someone most of their lives.

Some people with chronic pain describe it as relentless, distracting, and life-altering. Some people struggle to care for themselves and their children, stay employed, or carry out their day-to-day responsibilities.

For people who have chronic pain, it can often be connected with an invisible illness.

According to the Invisible Disabilities Association, an invisible illness is a physical, mental, or neurological condition that’s not visible from the outside. The list of diagnoses included in this is quite long, but rheumatoid arthritis, psoriatic arthritis, lupus, ankylosing spondylosis, and fibromyalgia are common examples.

This type of disability can lead to misunderstandings, false perceptions, and judgments.

Just because someone with chronic pain and an invisible illness has limitations or a disability does not always mean they are completely disabled. It does not mean that they can always do some things or never do other things. Often there are good days and bad days, with unpredictable ups and downs. This can be a very difficult concept to grasp for someone without pain.

How do you explain this to others? Here are some examples of ways I help other people understand what I am going through.

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Every day is unpredictable, every day is different

Every day is different. It can be tough to make plans or commitments because I never know how I will feel tomorrow, in a month, or in a year.

Usually, I really want to participate, but it can be difficult to convey that when each day brings on an onslaught of unexpected challenges. Even if I’ve been feeling great for weeks, tomorrow is never guaranteed.

I don’t want your pity, but I may need your help

I don’t want pity. If you want to truly help me, ask me what I need and speak to me like an equal. This might mean picking up a prescription, helping with an assistive device, or even modifying the plans to be less physically demanding.

For example, if we’re planning to bike to a mountain summit tomorrow and my pain flares, change to a chartered bus tour instead. If we have dinner plans, but sitting in a hard, wooden chair is impossible today, offer to bring the food home for us to enjoy there.

Hold the guilt. I have enough guilt about missing out on things already. Also, guilting me doesn’t help to make things happen. If you’re upset because I didn’t make it to your event, didn’t put away the laundry, or wasn’t as intimate as you would like, just try again another time.

Try to be flexible, too. The plans may need to change a little bit. Today may be different from yesterday.

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Even though this isn’t new for me, it still takes an emotional toll

I still have a lot of big emotions about my pain and invisible illness. Having limitations is life-altering. Not being able to participate in things I want to do — that bring me joy — is anxiety-provoking and upsetting.

Managing chronic pain and an invisible illness is a full-time job. Managing this is a lifestyle commitment. It’s not simply taking a pill and going on with my day. Sometimes this leaves less time for me to do other things.

I often lie about having pain. Sometimes it’s to make you feel better and sometimes it’s for me.

I don’t need suggestions or advice

Keep your unsolicited suggestions to yourself. I have an entire team of experts helping me manage my pain and invisible illness. It’s doubtful that you have something to offer that I haven’t heard before.

Also, pain and invisible illness are different for everyone. So are the treatments. Something that works for one may not work for another.

Hold your judgments about the medications, diet, or alternative treatments I may be using regularly or even just trying out. If I say it’s working, take my word. If you think it’s a placebo effect, keep it to yourself.

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Labels and preconceptions are hurtful and contribute to stigma

I’m not a “drug addict.” I am not faking it. In fact, many of the medications I take have endless side effects that can be scary and potentially permanent.

Labeling me as lazy is hurtful and simply not true. Calling me lazy is not helpful in any situation. Chronic pain and invisible disabilities can flare. This means they can wax and wane, often unrelated to treatments, lifestyle, or anything in my control.

My bad day is not a bad life. I still have a lot of love to give and am still capable of so many things.

The bottom line

Communicating about your chronic pain when it feels like other people don’t “get it” can be frustrating and disheartening. But giving people who care about you some insight into your life can be extremely liberating and can improve your relationships.

While they may not ever fully get it, I hope these tips help prompt you to explain your pain and receive some well-deserved understanding and support.

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About the author

Stefanie Remson

Ms. Stefanie Remson MSN, APRN, FNP-BC is the CEO and founder of RheumatoidArthritisCoach.com. She is a family nurse practitioner and is a rheumatoid arthritis (RA) patient herself. She has spent her entire life serving the community as a healthcare professional and has refused to let RA slow her down. She has worked with The Arthritis Foundation, The Lupus Foundation of America, Healthline, Grace and Able, Arthritis Life, Musculo, Aila, and HopeX. You can learn more at her website and on Instagram, Facebook, and Pinterest.

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