Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
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.
1. Remember that being sick doesn't mean that the sufferer is no longer a human being. Often the chronic pain sufferer spends most of their day in considerable pain and exhaustion. If you visit or live with them, they may not seem like much fun to be with, but they are still as aware as you of everything and have needs just like you, but they're more or less stuck inside a body with constant issues over which they have little or no control. Just like you, they still worry about studies, work, family, friends, and most of the time, would like to hear you talk about your interests and happenings, too.
2. Learn the code. Chronic pain sufferers will often talk differently from people free from constant pain. Living with fatigue, irritability, and sadness at their plight, many sufferers learn to bottle up their feelings and use code to cover up the level of pain. There's also a number scale for pain that doctors teach chronic pain patients early in their treatment. By habit, they may describe their pain on a scale of 1 to 10 where 1 is "no pain at all, feel wonderful" and 10 is the worst pain they ever had in their life. Their pain level ten may be outside your experience, it depends on what you've been through in life.
- Don't assume that just because the chronic pain sufferer grits their teeth and says that they're fine that they are. They could very well be covering up, fed up with the lack of understanding in others as to the constancy of their pain.
- Accept that words may be inadequate to describe how the sufferer is truly feeling. Think about a time when you experienced pain, like a broken leg, or a very nasty virus that pounded at your head and every muscle in your body. And multiply that and think of it being constant, every day, without respite. It's hard to find the words for that sort of pain.
- Respect that the person who is in pain is trying their best. Avoid saying, "Oh, you're sounding better!" or "But you look so healthy!" They are merely coping; sounding happy and trying to look normal. If you want to comment on that, it's certainly welcomed.
- Look for the signs of pain over the words, so that you can read between the lines. Things that will belie the chipper attitude include restlessness, shifting about, grimacing when they think you're not noticing, sweating, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language
5. Understand 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.
- Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies to everything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.
- 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.
- 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.
- 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.
- 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.
11. Be 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.
12. Balance your carer 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.