Part 1: "Pain is a team sport and I am the wicket keeper"
Gai lives in country NSW Australia and lives with her husband Ken who battles with pain after an accident some years ago. Robyn lives with her husband who is suffering pain due to spinal cord cancer.
Edited by David Garrison, MBD123, Kene, Martyn P and 62 others from WIKIHOW
Chronic pain sufferers have attempted numerous alternative therapies and know what therapies have worked or not worked for them. Some people have been misinformed or merely misunderstand the daily battle and quite often unintentionally undermine the sufferer.In the spirit of informing those who wish to understand: These are some things that can help you to understand, and help, people who suffer from often debilitating, chronic pain.
1Remember that being sick does not mean that the sufferer is no longer a human being. Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body over which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.
2Learn the code. Chronic pain sufferers will often talk differently from people free of constant pain.  A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the doctors can measure effects of treatments. Description of pain on a scale measuring from 1 to 10, the 1 is "no pain at all, feel wonderful" and 10 is the "worst pain ever felt". Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others. Accept that words may be inadequate to describe how the sufferer is feeling. Recall a time when you experienced pain, then multiply the intensity and attempt to imagine that pain present twenty-four hours a day, every day, without relief. It's hard to find the words for that sort of pain.
3Recognize the difference between "happiness" and "healthy". When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.
- Respect that the person who is in pain is trying their best. When the chronic pain sufferer says they are in pain - they are! They are merely coping; sounding happy and trying to look normal.
- Look for the signs of pain: grimacing, restlessness, irritability, mood swings, wringing of hands, moaning,sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language.
4Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make light of their pain than is the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.
5Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
6Leave your "pep talk" mode for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can and respect their answer.
- Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
- Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can't always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
7Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"
- Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.
8Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.
- A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
- Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
9Be sensitive when suggesting medicines or alternative treatments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.
- On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.
10Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.
11Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normalcy" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.
12Balance your career responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able but also care for yourself.
- When asked about their pain level, chronic pain sufferers may not give you their actual level of pain. Because their pain is chronic, they are used to a certain level of pain, and may just accept that as normal or no pain. They may only give you a correct pain level when they have some form of acute pain, their "normal" level of pain that they live with daily changes, they experience pain that now feels differently (I.e., "shooting" instead of "aching", " burning" instead of throbbing"), or they are asked directly about their current levels of both acute and chronic pain.
- Remember the pain or discomfort and the ability of a chronic pain sufferer can vary greatly even within the span of one day.
- Just because someone often cannot do certain activities, or has cancelled before, does not mean that you either shouldn't ask them to join you or should hide that you have plans from them! There may be some days when that activity is manageable, and think about how hurt you would feel being left out all of the time. Chronic pain is isolating enough!
- Pain is a difficult thing to describe to another person. It is felt personally and it is based in both psychological and physical parts of us. The best thing you can do is to never assume that you know how it feels for that person. Sure, you know how it feels for you but each of us is different and it's impossible to get right inside a person's skin and feel their pain.
- Don't forget, they are still just as "normal" as you, even if they have different struggles. They want to be seen and enjoyed for who they are.
- No one wants to feel this way. It's awful living with chronic pain, but it's even worse when people give up on them or misunderstand. Punishing someone for not following through with one thing or another is going to make them feel worse and show them that you really don't understand. Those experiencing chronic pain already deal with more than most could ever comprehend. Everyday life is so hard and very lonely. Constant support, positiveness, communication and of course showing your love -- those are all crucial, because life is quite depressing day-to-day with any chronic pain.
- Truly think about all the responsibility that comes with caring for someone who is sick before dating them. Understand there is a lot to deal with and if you're even the tiniest bit hesitant, DO NOT BOTHER trying to talk yourself into it. You either are in it to be in it for it all or you need to respect yourself and them by not pushing yourself into a situation like having a relationship. It does not make you a bad person to think you can't handle caring for someone with health problems, but it does when you end up resenting them or putting guilt on them for being sick.
- Instead of suggesting how we 'fix' our pain, consider just being empathetic and giving them a gentle hug to let them know you're there to support them. They already hear and see endless doctor's who tell them how to 'fix' or help their chronic pain.
- A smile can hide more than you realize.
- Sometimes just laying your hand on the shoulder of someone helps give them comfort. Remember to be gentle. It is a soft touch, something to help them connect.
- For those of you who care for someone who is ill and/or dealing with chronic pain, I truly hope you somehow get recognized and feel appreciated for all you do. It's not easy at all! Hopefully you get to see the real "me" [them] someday. It would probably be the greatest reward of all.
- Don't compare health problems. Don't say I've had that before and I'm fine now. Don't tell someone with chronic pain to suck it up and do their part. It shows your lack of understanding and makes the person living with chronic pain feel like a failer that they can't handle what they are experiencing and others would do a much better job in the same situation.
- Don't stop asking someone with chronic pain "How are you?" just because the answer might be a bit uncomfortable for you (just try and imagine how uncomfortable living it 24x7 gets!) Many people who used to ask me how I am now don't. Don't let the fact you might not like the answer stop you from asking, it may be the only opportunity to show you care about their well being.
- Please don't suggest another doctor, another treatment, another miracle cure or tell how someone else died from the same illness or someone else was cured. We'll smile and thank you, but it doesn't help.
- People who live with chronic pain know how they feel and are well aware of their situation, so avoid project on to the sufferer how YOU think they should be feeling.
- If you have read of a new breakthrough, don't assume that the person suffering from chronic pain knows. Some have given up looking. Every pain sufferer can benefit from a ray of hope, even if it doesn't lead to improvements or a cure.
- Just learn to be a good listener, sometimes sharing silence is good, don't have to fill every minute of conversation with words.
- You might think that the Chronic Pain Sufferer go to doctors because they seek attention, or because they enjoy it , or because they are hypochondriacs. What they are doing is looking for something to improve the quality of their life and often they are looking for the cause of their pain if it is not known.
- Depression may cause people to show more emotion(crying and tearful, anxious, irritable, sad, lonely, hopelessness, fear of the future, easily agitated, angry, frustrated, hyper/over talkative due to medications/need to vent/lack of sleep). This, like their pain level, may also vary day to day, hour to hour, minute to minute. One of the WORST things you can do is abandon someone with chronic pain. That just gives them one more reason to be depressed, feel lonely, and not be very positive.
- Chronic pain sufferers are not making it up and are not hypochondriacs.
- Avoid being judgmental about drug use pursued by chronic pain sufferers. If medical marijuana improves their life, why debase that respite with moral uptightness?
- Further to the point about hypochondriacs, it was also pointed out on a back pain course that people who "imagine" they are suffering from debilitating pain are likely to be feeling as much pain.
- Comfort those with chronic pain, and let them know that you are there for them. Being in pain can be a very lonely, isolating thing. A loyal friend is a life saver!
- Depression can cause some people to show less emotion, which can in turn mask the pain because the sufferer ceases to make it known. Always be on the look out for signs of depression and do not confuse this with there being any less pain.
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