Information and advice for you, when you’re a family member, friend, co-worker, neighbor etc of someone suffering from chronic pain.
So you might be wondering what could be so difficult about it. Someone in pain would like some loving attention, support and help, and generally people around her have good intentions and love to give her help and support. So why does it go wrong so very often?
The keyword is communication. But even if we know that, we’re nowhere near there yet, because apparently it still goes wrong for many people even with this knowledge.
Why is it so difficult for those dealing with a chronic pain patient?
- You can’t feel or see the pain.
- The pain is unpredictable and can change from one day to the next, so you never know how the person in pain will be doing when you meet them.
- Her* negative emotions might be inconceivably intense to you, which makes them difficult to deal with. Maybe you’ll even get annoyed because you think she*’s overreacting.
- Pain is not an interesting or pleasant subject.
- Acts tougher than she is, because she doesn’t want to bother you or because she feels guilty.
- Complains all day.
- Constantly retreats into her own painful world.
- Does not respect her own limitations.
- Gets hung up on the pain.
- Becomes depressed and loses faith in life.
Getting support from those around her, and not needing to deal with her pain alone, makes such an enormous difference for someone living in pain
As you can probably imagine, the problem of having persistent pain tends to have a significant effect on the pain patient’s mood. Someone could feel angry, sad, frustrated, scared, or all of these at once. Your friend will have both good and bad days, and those are not always in line with her emotional ups and downs.
Have you ever found yourself doubting whether the patient’s pain is really that bad? Wondering whether the pain patient just enjoys not having to go to work or doing annoying household chores anymore, and are happy to have someone else deal with all of it. Do you ever think maybe she’s overreacting for the sake of having other people serve her or to get out of visiting the in-laws, which she always hated to do? In actuality, this happens a lot less than people think it does. A great majority of pain patients would give up everything to become able to do all those things on their own again. The loss of nice things usually outweighs the annoying chores they don’t need to do anymore by a ton and a half.
Is it all in her head?
You might think it’s all in their heads when you have noticed that the patient seems to be in less pain when she’s having an interesting conversation with friends, or watching an exciting movie. Be aware that psychological and social factors do play a part in the pain , but that doesn’t make the pain any less. Do keep in mind that distraction is often a temporary painkiller, and take advantage of this knowledge.
Be aware that chronic pain is unpredictable. The patient usually doesn’t know how they’re going to be doing the next morning. Being able to stand up straight for half an hour one day doesn’t mean that she’ll be able to do the same the next day. Even if she’s able to take a trip downtown one day, it’s possible that she won’t even be able to walk to the bathroom on her own the next.
Don’t assume that the patient being happy means that she’s not in pain, or that she’s getting better. It is important to realize that she’s doing her best to be as happy as possible, despite the pain. Appreciate and respect that, and compliment her on it every now and then.
Become a strong helper
What can you do to try to reverse that vicious downward spiral that’s threatening to drag your friend down? How do you become a ‘strong helper’?
A strong helper is someone who understands the person in pain, believes them, supports them and helps them when needed.
A strong helper:
- Will take the person suffering from pain seriously.
- Believes the person in pain.
- Makes sure to retain a strong, and warm relationship.
- Remains a regular presence in the life of the person suffering from pain.
- Is a friend in both the good times and the bad times.
- Figures out what he/she can do to make the life of the person suffering from pain and their family a little easier.
- Can’t take away the pain, and recognizes that they are not expected to do so.
- Doesn’t always need to physically assist. Sometimes, a simple letter, phone call or visit is enough.
So ask someone who is suffering from chronic pain: ‘What can I do for you?”, ‘How can I make you feel better? Now, tomorrow, or next week?”, What are the things you cannot deal with right now, that have to be done?’, “What’s the hardest for you? Which chores are difficult for you? Is there anything your husband doesn’t have time for?” Make sure that it’s concrete!
Letter to a Friend
To create a better understanding between you and the patient, it might be a good idea to read the ‘Letter to a friend’
Shall I be your strong helper?
- “Do you want me to sit with you?”
- “You’ve got my ears. I’ll listen to your story”.
- “Do you want my shoulder and my handkerchief to cry on?”
- “Do you want me to make some tea?”
- “Should I bring a movie for us to watch together?”
- “Do you want me to mow your lawn weekly?”
- “You love spaghetti and egg fried rice so much. Do you want me to make you a few portions and put them in the freezer for you?���
- ���Do you want me to ask my husband to rake up the autumn leaves in your front yard?”
- ���Want me to come do some chores someday? Just make me a list.”
- ���I go to Whole Foods/Walmart every Thursday. Mail me your shopping list, and I’ll pick up your stuff as well.”
- “Want me to cook double once a week and bring half of it over?”
- “Want me to walk the dog sometimes? Which days are the most useful to you?”
- “Want me to help you with your new IPad/laptop? It’ll help you communicate with the outside world.”
- “Want me to go along to the doctor/therapist/hospital with you?”
- “Do you just want me to be there for you, as your friend?”
It’s only a few ideas that might help you figure out what you can do for the person in pain you care about. At the end of this chapter, you’ll find more dos and don’ts, which emphasize the ‘doing.’
A good listener listens with their ears and their heart!
Below you’ll find some of the dos and don’ts. It���s just a small pick from the book, there are many more in “Coping with chronic pain, a team effort! For You and Your Family & Friends’. Order your copy here.
- Try to imagine what it means to always be in pain.
- Take the patient and her ailment seriously.
- Use distraction to help alleviate the patient’s pain.
- Read the ‘Letter to a friend.’
- “Do you want to talk about how you’re doing, or would you rather talk about something else?”
- “I don’t know what to say, but I feel for you. I care about you.”
- “I have no idea what you go through, but I’m here for you if you want to talk about it.”
- ���But you look good. I admire that you’re able to do that despite the pain!”
- “Sorry, I’d love to listen to you, but I’m really busy right now. I’d like to do it later when I’m not as distracted and not as busy. Is that alright with you?”
- “Unfortunately, I can’t cure you, but I can be your friend.”
- ���What can I do to make you feel better?”\
- “If you want to cry, my shoulder is always available. Maybe it’ll be a relief to you.”
Even if you can’t give practical help because you’re not healthy yourself, too busy, or live too far away, you can still be a strong helper by giving them the occasional phone call, or sending a letter or e-mail every now and then.
- Assume that she’s overreacting to avoid bothersome activities.
- Assume that it’s all in her head because she seems to be doing better when she’s distracted.
- Allow the patient to constantly retreat into her own world.
- ���Just call me when you need me!”
- “Don’t complain so much. Everyone’s in pain sometimes.”
- “Just don’t think about it. Find something to distract yourself with and you’ll do better in no time.”
- ���You don’t look sick,” or “but you look so good!”
- “You’re so cheerful. You’re doing good, right? Has the pain healed?”
- “You need to do this and that. It’s good for you.”
- “How are you doing? Are you doing better?” (Chronic ailments generally don’t heal. That’s what the word ‘chronic’ refers to.)
- Ask: “How’s your ailment/pain?” when you don’t have time, can’t be bothered or can’t focus enough to listen to her. The patient can tell.
- “Be tough, don’t let your emotions go like that,” when the patient is exposing her emotions or shares her concerns with you.
- “But I think about you all the time.” (Sorry, but that doesn’t help me. Unfortunately I’m not paranormally gifted.)
- “You could do it yesterday/last week. Come on, I know you can do it.”
- “Maybe it’s all in your head. You need to worry/stress/doubt a little less.”
- “You should start using a different hospital. I’ve heard nothing but bad things about this one.”
- “You should just learn to deal with it.”
- “Just give it a place in your life.”
- Assume that she’s overreacting to avoid bothersome activities.
- Assume that it’s all imaginary.
- Think for the patient.
- Ignore the invisible pain or think that it’s better for the patient not to talk about it.
- Suggest therapy or alternative methods that helped someone you know/was mentioned in a magazine.
- Be offended when your advice isn’t being followed up on immediately. Don’t conclude that she’ll have to figure it out herself, assuming that she doesn’t want to get better.’
- Say, or show that you’re thinking: �����I won’t invite you anymore, because you never show up.’
- Think that the person suffering from pain will be fine if you avoid seeing her for a while.
A Strong Helper is prepared to listen to whatever the person suffering from pain has to share, whether that’s her worries, her laughter or her silence.
* To improve the readability of this page, I will refer to the patient as ‘she,’ ‘her’ and ‘mother’ instead of using ‘he/she,’ ‘his/her’ ‘mother/father,’ all the time. It reads so much easier and I will assume that everyone is able to fill in the correct form. I chose to write in the female form because chronic pain is more common amongst females than it is amongst males. I will refer to partners of CPP’S as ‘him’ because statistically, most relationships are heterosexual by nature.