How to Understand People Living with Chronic Pain

Chronic pain refers to pain that lasts for three months or more following an injury or medical treatment. Acute pain is a natural response of the nervous system to injury, but in the case of chronic pain, the pain signals persist abnormally. This condition can cause significant distress and exhaustion for the patient. While chronic pain can arise from a known cause such as injury, illness, or infection, in some individuals, it appears and continues without any identifiable history. To understand those affected by chronic pain, it's important to learn about the condition, offer supportive attitudes, and be mindful of what to say and what not to say.

Learn more about the pain experienced by the patient. Pain sensations differ from one patient to another. It can be helpful if the patient shares their personal story of living with daily pain. The more you know about their experience, the better you can understand their feelings.

• Has the patient ever had a back injury, a severe infection, or any other condition such as arthritis, diabetic neuropathy, or another type of nerve damage? It is important to understand when the pain started and to explore or read the stories of others with similar experiences.
• Sometimes doctors cannot identify the specific cause of the pain. They only know the patient is in pain.
• Do not pressure the chronic pain patient to talk about anything they are uncomfortable with. For some people, discussing their pain only makes them feel worse.
• Common types of pain in chronic pain sufferers include headaches, back pain, joint pain, pain from peripheral nerve damage or central nervous system disorders, or unexplained pain.
• A patient may experience more than one type of pain at once, such as chronic fatigue syndrome, endometriosis, sciatica, peripheral neuropathy, inflammatory bowel disease, or depression.
• Understand that words cannot fully capture the pain the patient experiences. Try recalling a time when you were in significant pain and imagine that pain continuing 24 hours a day, every day, for the rest of your life. It is incredibly hard to find the right words to describe that kind of pain.

Understanding the Pain Scale. The pain scale, represented numerically, is used by doctors to assess treatment effectiveness. Ranging from 1 to 10, it illustrates the severity of pain, with 1 meaning 'no pain, very comfortable' and 10 representing 'the worst pain imaginable.' Ask the patient to rate their pain on this scale.

• Don’t assume a person isn’t in pain if they say they’re fine. Many individuals hide their pain because they feel others won't understand or empathize.
• When asked about their pain level, someone with chronic pain might not accurately express how bad it really is. After living with pain for so long, they may have adapted to a certain level and consider it normal or not painful. They may only realize the full extent of their pain when they experience an acute flare-up, where their usual pain feels different (e.g., 'sharp' instead of 'aching' or 'burning' instead of 'throbbing').

Recognizing Coping Mechanisms. When you have a cold, you may feel miserable for a few days or weeks but still try your best to go about your day. A person with chronic pain, however, endures excruciating feelings for extended periods. They may have developed coping mechanisms to mask their pain or simply lack the energy to function normally.

Watch for Signs of Depression. Chronic pain can cause secondary depression (can you imagine feeling sad and depressed if you were in constant pain for months or years?). Depression can be a result of chronic pain, and chronic pain can stem from depression.

• Depression might cause some individuals to hide their feelings, meaning the pain is hidden as they suppress it. Always watch for signs of depression and don’t assume that the person is feeling less pain.
• On the other hand, depression may cause someone to show more emotional distress (crying, anxiety, restlessness, sadness, loneliness, hopelessness, fear about the future, irritability, frustration, talking excessively due to medication, emotional release, or sleep deprivation). This, along with their pain, can fluctuate from day to day, hour to hour, or even minute to minute.
• Neglecting a person with chronic pain is one of the worst things you can do, as it adds to their feelings of depression, loneliness, and hopelessness. Do your best to stay by their side and show support.

Respect Physical Limits. Some illnesses display clear symptoms, such as fever, paralysis, or broken bones. However, with chronic pain, you can't always know the extent of someone's physical limitations at any given moment. You can’t always tell this from their facial expressions or body language.

• Patients might not know how they will feel each morning when they wake up. They only know how they feel that day. This can be confusing to others but is incredibly frustrating for the person in pain.
• Just because a person is able to stand for 10 minutes doesn’t mean they can stand for 20 minutes or an hour. If they manage to stand for 30 minutes one day, it doesn’t mean they will be able to do so the next day.
• Limited mobility is not the only restriction that someone with chronic pain faces. Their ability to sit, walk, focus, and communicate may also be impacted.
• You need to show great understanding when someone with chronic pain says they need to sit, lie down, or take medication right now. They may not have any other option and can't wait because the pain can strike at any moment or while they are doing anything. Pain doesn’t wait for anyone.

Look for Signs of Pain. Frowning, restlessness, agitation, mood changes, hand twisting, groaning, sleep disturbances, teeth grinding, poor concentration, reduced activity, or even expressions of suicidal thoughts or words that describe suffering or pain. Be observant of what they are experiencing.

Understand that chronic pain is real. You might think that people with chronic pain visit doctors simply to seek attention, because they like the attention, or they might be imagining their pain. In reality, they are trying to improve their quality of life and identify the source of their pain if it's still unclear. No one wants to feel like that, but they don’t have a choice.

Acknowledge what you cannot know. Describing pain is difficult for others to understand. It is experienced individually, influenced by both psychological and physical factors. No matter how empathetic you are, don’t assume you fully grasp their experience. You may know what that feeling is like for you, but everyone’s experience is different, and you can't step inside the person’s mind to truly feel their pain.

Demonstrate empathy. Empathy means striving to understand the feelings, perspectives, and behaviors of others by seeing the world through their eyes. This understanding will guide you in knowing how to act or what to say. Someone with chronic pain differs from you in some ways, but there are many similarities. Focus on those commonalities and work to understand the differences.

• Even when unwell, they are still human. Despite enduring pain most of the day, they still want what anyone would desire: to enjoy work, family, friends, and leisure activities.
• Chronic pain sufferers often feel trapped in a body they can't control or can control very little. Pain pushes everything they once enjoyed beyond reach and can lead to feelings of helplessness, sorrow, and depression.
• Remember how fortunate you are when your health allows you to do anything. Imagine what life would be like without that privilege.

Understand that the person in pain is trying their best. They may put on a brave face, seem cheerful, or appear normal whenever possible. They are living to the best of their ability. Keep in mind that when they say they are in pain, it means they are genuinely suffering!

Listen attentively. One of the best things you can do for a person in pain is to listen to them. To be an effective listener, focus and try to understand what is happening inside the person, so you can truly grasp their feelings and what they need.

• Make it clear that you are there to listen. Many people suffering from chronic pain feel that others don't believe them or ridicule them for being so weak.
• Try to decipher what they are hiding or holding back through their body language and tone of voice.
• Allow yourself to be vulnerable. Sharing means both parties offer something. To build a deep, empathetic connection and truly become close confidants, you need to reveal your own feelings, beliefs, and experiences.
• Read the article How to Listen Effectively for tips on becoming a great listener.

Be patient. If you find yourself growing impatient and wanting the person to just 'move on,' you may be placing guilt on them and undermining their resolve to deal with their illness. They might want to follow your advice, but they lack the strength or ability to cope due to their pain.

• Don’t be discouraged if the person seems overly sensitive. They have endured much suffering. Chronic pain can devastate both body and mind. They are doing their best to cope with pain that frustrates and exhausts them, but they aren't always okay. Try to accept them as they are.
• A person with chronic pain might have to cancel plans at the last minute. If this happens, don’t take it personally.

Help the person in pain. Those suffering from chronic pain often rely heavily on healthy individuals for assistance at home or when they are too weak to go out. They may need help with bathing, dressing, personal care, and other daily tasks. They might need transportation to medical appointments. You may be their link to 'normal' life, helping them reconnect with things they miss and long to regain.

• Many people offer help but aren’t truly there when needed. If you’ve offered to help, keep your word. The person you are caring for depends on you.

Balance caregiving responsibilities. If you live with or regularly provide care for someone in chronic pain, you need to maintain balance in your own life. If you neglect your own needs, health, and work, being there for someone with chronic pain can take a toll on you. Avoid burnout by seeking help from others and taking time to rest. Care for the person to the best of your ability, but also take care of yourself.

Respect them. Even though someone with chronic pain may change, their core self remains the same. Remember who they are and what they did before their pain worsened. Their intellect is still capable of the work they once loved, but they have no choice but to give it up. Treat them with kindness, care, and avoid belittling them.

• Punishing a person because they haven't overcome something will only make them feel worse and show that you don’t truly understand them. A person dealing with chronic pain has faced challenges most people can’t even imagine. Try to understand why they can't overcome it.

Invite them into your life. Just because someone can't always participate in certain activities doesn't mean you should stop inviting them or hide your plans. There will be days when activities are manageable, and chronic pain has already caused them enough loneliness! Be understanding and invite them to join you!

Open your arms for a hug. Rather than advising the person on how to cure their pain, show empathy and offer them a gentle hug to let them know you support them. They've likely heard countless doctors give similar advice.

• Sometimes, simply placing a hand on someone's shoulder can provide comfort. Be gentle. Use light touches to help them connect.

Save your encouragement for kids or friends at the gym. Understand that chronic pain can vary, and encouraging words might frustrate the person and make them feel more discouraged. If you want them to do something, ask if they are able to and respect their answer.

• Don't say: “But you used to be able to do it!” or “Come on, I know you can do it!”
• Stay positive as much as possible and engage in activities like walking, biking, or Tai Chi. These can help ease muscle and joint pain. Sometimes, inactivity can worsen pain, but avoid lecturing about the benefits of exercise or fresh air. These might not relieve pain for someone with chronic pain and may even intensify it. When you say they need to exercise or ‘forget the pain,’ it can make them upset. If they could, they would have already done it.
• Another harmful statement might be, “You just need to try harder.” Engaging in any activity for a short or long period can cause more harm and exacerbate their pain – not to mention the recovery time can be stressful.
• Don’t say things like “You’re too sensitive,” “You need to face it more strongly,” or “You must do this for X, Y, or Z.” Of course they’re sensitive! You can’t know what they are dealing with, nor the level of pain or anxiety they are facing.

Don't play the role of doctor. People with chronic pain often see doctors regularly, trying to improve and following prescribed treatments. Your advice may not be accurate, especially if you don't have medical training or knowledge of what they are going through.

• Be cautious when suggesting medications or alternative treatments. Prescription drugs, over-the-counter medications, and alternative therapies can have unpredictable side effects and consequences.
• Some people may not welcome advice – but it doesn’t mean they don’t want to get better. They may have already heard about or tried the treatment. Or they may not be ready to try something new because it could add more burden to their already heavy life. Ineffective treatments can cause mental anguish when they fail, and this might make them feel worse.
• If a therapy has worked for someone else with similar pain, you can mention it when the person seems open to hearing it. Be subtle when making suggestions.
• Don’t explain the prescribed medication if they have been given one. Managing pain is difficult, and there are days when they need to take more medication. Tolerating the medicine does NOT mean addiction.
• Avoid commenting on the medication they are currently taking.

Never say unnecessary things. Don't assume you know best by saying things like, "Oh, life is like that, you'll have to face it," or "She'll get over it," "From now until then, you'll have to try your best," or worst of all, "Oh, you still look fine." Such statements will only make you seem distant from the person in pain. They will only make the sick person feel worse and lose hope.

• People living with chronic pain are fully aware of their condition, so avoid telling them how you think they should feel.
• Offer useful suggestions by saying things like, "What can I do to help you?" or "Is there anything I can do to help you cope with the pain?"

Don’t compare health issues. Avoid saying, "I had that too, and now I’m fine." This shows a lack of understanding and makes the person in pain feel like they are failing because they can't handle their situation as well as others might in the same circumstances.

Be optimistic. Living with chronic pain is already overwhelming, but it can become worse when people abandon them, misunderstand them, or spread negativity. Daily life can be extremely difficult and lonely for someone suffering from chronic pain. Unwavering support, fostering hope, and showing love are crucial for communication with them.

• Comfort the patient and let them know you're always there for them. A good friend can be a savior!

Ask about their treatment method. Inquire whether the treatment they are using is effective. It’s important to ask helpful questions, such as whether they feel the treatment is working or if they find the pain unbearable. People often fail to ask open-ended "helpful" questions that could allow someone with chronic pain to open up and truly communicate.

Ask how they feel. Never stop asking, "How are you feeling?" just because the answer might make you uncomfortable. This could be the only opportunity you have to show you care. And if you don’t like the answer, remember, it’s their response – not your opinion.

• When the patient opens up, don’t say they "talk too much about it" or "only talk about their illness." Understand that pain might be a huge part of their life. They might not want to discuss things like vacations, shopping, sports, or small talk.

Understand that silence can be beneficial too. Sometimes, simply sitting together in silence can be comforting, and the patient will appreciate your presence. You don't have to fill every minute with conversation. Your mere presence speaks volumes!

Acknowledge when you don't have the answer. Avoid using empty phrases or misleading words to cover up your lack of knowledge. Even the medical field doesn't have all the answers to chronic pain. Saying 'I don't know' and suggesting further research on the matter won't harm anyone.

• Remember, this is not their fault! They don’t want to be in pain, so showing frustration when the patient can’t do something will only bring them down further.
• Invite them to go shopping, send a letter, cook, or do anything else.
• Keep in mind that pain or discomfort, as well as their abilities, can vary greatly, even within the span of a single day.
• A smile can hide more than you might think.
• People with chronic pain did not choose this condition, and they aren’t the ones who imagined it.
• Think carefully about the responsibilities involved in caring for someone with a health issue before considering a relationship. Understand that you'll face challenges, and if you have any doubts, DO NOT try to convince yourself to proceed. You need to be prepared and respect both yourself and the other person by not forcing yourself into a romantic relationship. It’s not wrong to recognize that you might not be able to care for someone with health issues, but it would be wrong if, in the end, you resent them or make them feel guilty for being sick.
• Don't forget that those with chronic pain are still normal, just like you, even if they face different challenges. They want to be seen and enjoy being themselves.
• Despite the challenges, caring for someone dealing with illness or chronic pain can be rewarding. Sometimes you’ll witness their progress, and they may return to a more 'normal' state. The person you care for, as well as those around you, will recognize and appreciate all that you do.
• Chronic pain is often linked to depression and anxiety. Additionally, the increased use of painkillers to manage unbearable pain may raise the risk of suicide. Seek professional help if you or anyone with chronic pain exhibits signs of severe depression or suicidal thoughts.
• Chronic pain sufferers also face sleep issues. Finding treatments for sleep problems or depression can help alleviate their pain.