Having constant chronic pain changes almost every aspect of a person's life. It's exhausting.The levels can rise and fall and the pain makes it difficult to think and concentrate. Every activity, from the moment of getting out of bed to going back to bed again, must be carefully considered. Pain, fatigue, required recovery times, and other symptoms should be assessed and considered in the context of what has been done recently, what needs to be done, and planned activities ahead.
Here are some things to keep in mind when supporting a person living with chronic pain:
1. People with chronic pain, such as Complex Regional Pain Syndrome (CRPS), seem unreliable (they can't count on themselves). When they feel better they promise things (and they mean it); When they are in severe pain, they may not even appear, often without warning. People in pain need the flexible time found in many cultures. Don't take it personally or stop inviting them to events.
2. An action or situation can cause pain several hours later, or even the next day, causing the person to need more time to recover. Delayed pain is confusing for people who have never experienced it.
3. Don't touch without asking. People with CRPS experience allodynia - extreme pain from normally non-painful stimulation. When the slightest breeze in an affected area, sound vibrations or the brush of a feather can hurt, then a hug, a touch or a handshake can hurt much more and cause a painful reaction that can last minutes, hours or even days.
4. Pain can inhibit listening and other communication skills. People in pain can suffer from "brain fog." This is a cognitive dysfunction that can cause problems with memory, concentration, and recall of words. They may know what they want to say, but cannot find the words or forget what they were saying during a conversation.
Concentration may be lacking when there is a lot of pain. It's like having someone yell at you or try to speak to a fire alarm going off in the room. The person may be listening without responding. You may have to repeat a request or write things down for a person with chronic pain. Yes, you may have said something to them before, or asked them a question before, but they can't really remember. Don't take it personally, think you are being ignored, or think they are stupid.
5. The senses can become overloaded while in pain. Noises that normally wouldn't bother you seem like too much. They may need "time out" or quiet time in another space for a while for their nervous system to calm down. Sensitivity to other senses, such as smells, can lead to headaches, brain fog, and other symptoms.
6. Patience may seem short. They often cannot wait in a long line or wait for a long conversation, etc. They may become irritated or appear grumpy when their pain levels are high.
7. Don't ask "how are you" unless you are genuinely prepared to listen, just draw attention inward and remind them that the pain is there.
8. Be there to listen without judgment. Often times, people in pain have no one to listen to how much it hurts or to help them with the simple little things that they struggle with but don't want to admit they are hurting. You can walk away, but they are trapped in the same body, trapped in pain, day after day. If someone suffers all day, every day, then it is reasonable for them to complain at some point.
Just listen. They may be angry that this has happened to them, they may feel anxious or depressed about not being able to carry on with their "normal" life. Let them know that they are being heard by paying attention to them and allowing them to express themselves.
9. An outbreak of pain can appear very quickly and unexpectedly. These rashes can be caused by almost anything, from too much activity to a change in weather, inflammatory foods, physical contact, stress, allodynia due to a light breeze, etc. or for many other causes that in many cases cannot be identified. This will sometimes decrease after a short break, but it could last for days, weeks, or months. Chronic CRPS pain rises and falls unpredictably.
Understand and be considerate if they say they need to sit, lie down, or take medication, etc. immediately. Even if they seemed perfectly fine just a few minutes ago, for a person with chronic pain, a sudden flare-up can become completely unmanageable in a matter of seconds.
10. Knowing where a shelter is, such as a sofa, bed, or comfortable chair, is just as important as knowing where the bathroom is. A visit is much more enjoyable if the person with chronic pain knows that shelter is available if needed. A person with chronic pain may not want to go anywhere that does not have space to sit or lie down if necessary.
11. When in pain, a small task, like washing, can seem like an insurmountable task. An hour later, the same job can be pretty cool.
12. Small acts of kindness can seem like great acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be very important to a person who feels temporarily helpless in the face of severe pain.
13. Give help without asking. Get involved and help them with their daily responsibilities, especially if they have had a pain flare for more than a couple of days. Cook dinner or pick up some groceries to bring. Watch your kids or help out around the house. Tasks that are easy for you, like changing sheets, may seem impossible to a person in pain.
14. Offer help in specific ways. People in pain don't like to burden others, so don't just ask if you can help them, but offer specific help. Can I run an errand for you? If you can do it in a way that doesn't sound like a chore to you, it will be easier for them to accept it. that is to say. "I'm at the store, do you need milk, bread or something else while I'm here?" "I'm cooking a batch of soup, can I get something?"
15. Never assume that a person has no pain. Chronic pain sufferers often want to appear normal, they don't like burdening family and friends, they don't like pain dominating their relationships with others, and they just want to adjust to normal situations. They will often modify their behavior in front of others, wear a "mask of normalcy" and respond with "I am fine" even when they are in severe pain.
16. Understand that pain is always there. A person living with chronic pain has the same range of emotions and the right to participate in life as everyone else. When they see a loved one or friend, they are happy and smile. When they enjoy your company, they can laugh. You can see them enjoying a field trip or an online post of them looking happy or participating in an activity.
This does not mean that they are not in pain. It simply means that they carry on with their life to the best of their ability. Focusing on the pain can make it worse. Distraction is one of the best pain therapies and one of the best ways to manage your pain is to enjoy time with the people you love or participate in fun activities when you can.
17. Believe them. When they say they have pain, they are!
18. Pain is not always easy to locate or describe. Sometimes there is a feeling of discomfort all over the body, with pains hard to describe all over the back or both legs, but not in one particular place that I can point to. Our vocabulary for pain is very limited compared to the body's ability to feel various discomforts. Often also, people living with CRPS have tried to describe their pain before and know that others just don't "get it," so they simply stop trying or sometimes don't have the energy to explain it.
19. Respect their daily physical limitations. With CRPS, mobility, pain levels, strength, fatigue, and the ability to cope can be extremely unpredictable and frustrating for everyone. They are not sure from day to day, and sometimes from hour to hour, how they will feel and what they will be able to do. A person with CRPS can be on their feet for 5 minutes, but not for hours.
10. You may have been able to walk today, but tomorrow you will need to use crutches or a wheelchair. Just because they could do something an hour ago does not mean they can do it now or tomorrow.
20. Although we have good reason for pain, medical science remains limited in its understanding of disorders like CRPS. That doesn't lessen the pain, it just reduces their ability to explain all aspects of their pain, why it happens, and make you believe them.
21. Nobody wants to feel bad or have pain. Most of the people living with CRPS were once very active and desperately want to find effective answers and treatments for their situation. They did nothing wrong. CRPS intruded and has changed their life in ways that only they can fully understand.
22. Not being able to work is not a vacation. People with CRPS who cannot work are struggling every day to perform simple tasks and activities. Showering and dressing can be difficult. Many are homebound, too sick to leave their homes except for medical appointments. Often times just walking out the front door will raise your pain levels, from the sun or the breeze that touches your skin, to noises and activity levels that are too hard to bear.
23. Be patient. Not being able to participate in life the way you would like, or used to, can cause a wide variety of emotions. People who have chronic pain will often experience all stages of grief. that is, denial, anger, negotiation, depression, and acceptance.
They may go through some or all of these stages more than once. They mourn the loss of the life they had and the loss of the life they dreamed of having in the future.
They may not act as they normally do, they may become easily irritated or angry or hostile. They may even experience significant personality changes throughout this time. Please try to be patient and tolerant in these situations and think about how you would feel if you had a really bad toothache for days that wouldn't go away, then magnify it about 10 times. They often find out then or after that they are misbehaving and will feel guilty enough. Pointing out their bad behavior can make the situation worse.
24. A little empathy can go a long way. People with CRPS just need someone to be there to help them. The reality is that many people with chronic pain often feel like a burden to their family and friends. Either simply asking for help with simple things, or simply mentioning how severe the pain is on a given day; feeling like a burden is one of the most common concerns among chronic pain sufferers.
People living with chronic pain do not want sympathy or pity for their situation.
You can make a big difference in the life of a person with CRPS by learning more about their symptoms, approaching them with compassion, understanding, and empathy, and offering friendship and support.
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