In hopeful anticipation of informing YOU, a person who wants to understand: these are some things that can help YOU to understand, and help, people who suffer from often debilitating, chronic pain:
Remember: chronic pain sufferers (CPS) have already attempted numerous alternative therapies and know what therapies have worked or not worked for them.
1. Remember that being sick does not mean that the sufferer is no longer a human being.
A CPS may spend the majority of their day in considerable pain. If YOU visit or live with a CPS, the CPS may be unable to enjoy the things they used to enjoy. The CPS remains aware, and desires to do what they used to perform. The CPS 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, pain keeps that enjoyment out of reach.
2. Learn the code.
A CPS will often speak differently from people free of constant pain. Do not assume the CPS is not experiencing pain when they say that they are fine. The CPS 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.
3. Recognize the difference between “happiness” and “healthy”.
Remember the last time YOU had the flu, YOU probably felt miserable. A CPS has 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 CPS says they are in pain – they are! They are merely coping; sounding happy and trying to look normal.
Look for 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.
The previous two steps made it clear that a CPS 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.
5. Understand and respect the CPS’s physical limitations.
Being able to stand up* for ten minutes doesn’t necessarily mean that the CPS 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.
6. Leave your “pep talk” mode for your kids and your gym buddies.
Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the CPS. As already noted, it’s quite possible (and 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 CPS, “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 CPS 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 affect 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.
7. Never 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 should throw lifelines rather than throwaway lines.
8. Check 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 CPS 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 CPS says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they 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.
9. Be 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.
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 CPS to open up and really talk. 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.
10. Don’t be put off if the CPS 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.
11. Be helpful.
The CPS 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 career responsibilities. If YOU are living with a CPS 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 CPS 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.