People living with chronic illness lead a difficult life. It’s made more bearable if the people they love surround them with understanding and support
Those who live with chronic illness and pain know that things change for them which are uncontrollable – and many of these things are invisible. Here are 12 Tips to Help Understand Someone Living with Chronic Illness. Unlike having a condition such as cancer or an obvious physical hurt from something like a car accident, most people simply do not understand or have a frame of reference to understand even a little bit about living with chronic illness and pain and its effects on a persons life. What makes things worse is that those who think they know are actually misinformed and perhaps even make things worse simply from their attitude and comments.
Here are a few steps to follow that can help one who doesn’t suffer from invisible illness or chronic pain better understand a person who does. Understanding and grace is the key!
Tip 1: Remember that being sick doesn’t mean that the sufferer is no longer a human being
Chronic pain sufferers and those living with chronic illness usually spend 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. They still are, however, just as aware as you of everything and still have needs – just like you. They’re simply more or less stuck inside a body with constant issues over which they have little to no control over. Just like you, they still worry and think about regular things like work, family and friends. They would also like to hear you talk about your interests and happenings, too.
Tip 2: Learn “The Code”
Often chronic pain sufferers will talk differently from those people free from constant pain. Living with constant fatigue, irritability, and perhaps depression, many chronic pain sufferers learn to bottle up their feelings and use “code” to cover up the level of pain. There’s a number scale for pain that doctors teach to chronic pain patients. 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. It’s all about perspective.
- Don’t assume that just because the chronic pain sufferer grits their teeth and says that they’re fine, that they are. They usually aren’t doing all that well and could very well be covering up, fed up with the lack of understanding from others as to the constancy of their pain.
- Accept that words may be inadequate to describe how the sufferer is really feeling. Think of a time when you experienced pain, something like a broken leg or a nasty head flu that pounded at your head and every muscle in your body. Multiply that feeling and think of it being constant, every day, without respite. It’s hard to find the words for that sort of pain.
Tip 3: Recognize the difference between “happy” and “healthy”
When you have the flu, you probably feel miserable while in the throes of sickness and body aches. Chronic pain sufferers have often been sick for years and their pain-filled lives have caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they’re in. They don’t want to be miserable all the time, but they often have to work hard at not being so miserable. So, if you’re talking to them and they sound happy, it simply means that they are happy at that moment – that’s all. It doesn’t mean that they’re not in a lot of pain, that they’re not extremely tired or getting better. They’re just happy.
- Respect that the person who is in pain is trying their best. Try to avoid saying things like, “Oh, you’re sounding better!” or “But you look so healthy!” They are simply 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 in their words so that you can learn to read between the lines. Things that will let you know the chipper attitude is being affected include: restlessness, shifting about, grimacing when they think you’re not noticing, sweating, sleep disturbance, teeth grinding, poor concentration, decreased activity among other signs of potential depression.
Tip 4: Listen
The previous two tips pointed out that people living with chronic illness can speak in code or make it sound as if their pain really isn’t as bad as it is. The next best thing that you can do is to listen to them properly and truthfully and 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.
Tip 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 for extended periods of time or even be able to repeat the action of standing for that long agin. Just because the person managed to stand up for thirty minutes yesterday doesn’t mean that they will be able to do the same today. With a lot of diseases or conditions, a person may show obvious signs of immobility, such as paralysis or total immobilization due to weakness, etc., but 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 how they will feel which is one of the most frustrating components of coping with chronic pain.
Tip 6: Leave your “pep talk” mode for your kids and your gym buddies
If you understand that chronic pain conditions are variable and can change, keep in mind that a “pep talk” can be aggravating and even demoralizing for the chronic pain sufferer. As already noted, it’s quite possible that for 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 are able to do it and simply respect their answer.
- Resist the urge to shower 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. Keep 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” will simply frustrate them – even to the point of tears. Do you not think that if they were capable of doing some things any or all of the time, they would?
- Remember that those living with chronic illness are constantly working with doctors and striving to improve and do the right things for their illness. A statement like “You just need to push yourself more, try harder” simply doesn’t help the situation. Obviously, chronic pain can deal with the entire body or be localized to specific areas and sometimes participating in a single activity for even a short period of time can cause more damage and physical pain. Don’t forget about the recovery time which can be intense. Remember, you can’t always read the pain on their face or in their body language. Chronic pain may also cause secondary depression – wouldn’t you get depressed if you were hurting constantly for months or years?
Tip 7: Be sincere and don’t use “throw-away lines”
There are phrases and statement that simply show ignorance to the plight of a sufferer from chronic illness and pain. Phrases like “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” and “Well, you look well enough“, etc., are lines that might make you feel that you’ve helped out by trying to instill some sort of tough love, but in actual fact these statements are both a form of distancing yourself from the person and making the sufferer feel worse and hopeless.
Tip 8: Check your patience and grace level
If you’re impatient and want the chronic pain sufferer to “just get on with it”, you will risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably want to do nothing more than 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 – this very common. If this happens, please do not take it personally as they will undoubtedly feel horrible about the cancellation. If it comes to mind, 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 pain pills right now.” It usually 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 in the middle of doing something. Chronic pain does not forgive nor does it wait for anyone.
Tip 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 invisible chronic pain sufferers may not really appreciate these suggestions, not because they don’t want to get well, but 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 can also carry the emotional toll of failure, which 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. Simply be sensitive in how you bring it up therapies because there is a pretty good chance the person has already heard of it.
Tip 10: Don’t get too offended if the chronic pain sufferer seems touchy or aggravated
If they chronic pain sufferer appears touchy or aggravated, it’s probably because they are. You need to understand that it’s not how they try to be nor is it personal and they are probably trying very hard to appear to be feeling fine. Just try to understand and approach things with grace. This person has been going through a lot and chronic pain is hard to understand unless you have had it. It wreaks havoc on the body, the mind, is exhausting and exasperating. They do their best to cope with their condition and are trying to live their life to the best of their ability. Just accept them as they are.
Tip 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. Remember that they probably feel badly enough as it is to be asking for help, so anything you can do will speak volumes. Sometimes they need help with shopping, cooking or cleaning. Others may need help with their kids, help getting to the doctor or to the store. You can be their link to the “normalcy” of life and can help them keep in touch with the parts of life that they miss and desperately want to do to feel like a normal person.
Tip 12: Balance your “care-er” and personal responsibilities
If you are the primary care-giver and living with a chronic illness sufferer or supporting such a person on a regular basis, you need to try and maintain balance in your own life. If you don’t take care of your own needs – health and work-life balance – being around a chronic pain sufferer can bring you down even though you’re probably trying hard not to be. Avoid suffering from “care-er” burn-out by getting other people to help, taking time out and trying to control your feelings of guilt. Care for this person as much as you’re able but also care for yourself.