♦“But you look so healthy!”
♦”You should go to this doctor here, the therapist over there, or this medium. I read about it in the Ladies Home Journal or the aunt of my neighbor got so much out of it and it’s really new.”
♦“Just call me when you need help”.
♦“My daughter saw you in Walmart’s the other day, so I thought you were doing fine.”
♦“I wish I had the luxury to just be sick rather than spend every day working.”
♦“Sickness is caused by stress. You need to learn how to manage it more effectively.”
♦“You’re way too young to be sick like this “(If only that were true…)
♦“Are you still in pain?” (Yes. That’s why it’s called chronic)
♦“Call me when you’re feeling better so we can grab lunch.”
♦ ……and the list goes on and on.
Why is this so common?
Is hoping for people to be a bit more attentive, empathic and understanding really too much to ask for?
Well, unfortunately, it generally is. Even for the nicest people around you, who wish nothing but the best for you, it can be very difficult.
For one time, if you looked at it from their side, what would you see?
- Pain is invisible from the outside
- You, yourself are invisible when you’re in a lot of pain (as you’ll probably be on the couch or in your bed)
- The pain is irregular. Since you’ll experience both good and bad days, and the bad days are the ones on which you’re invisible to your outer circle, people around you are constantly being fooled by circumstances. If they only rarely see you, and you, understandably, prefer not to talk about your pain and suffering on those occasions, you can’t blame them for not knowing how hard living with your pain is, and that you could really use their help and support.
- Pain is incomprehensible
It can be very frustrating to try to get the people around you to understand what’s going on with your body and why you feel so awful so often, especially when you look completely healthy. People have to understand it, and they have to learn to do so because, if you don’t explain it to them they can’t see it, and if they can’t see it, they can’t understand it.
- People feel useless and powerless regarding your pain. That is not a pleasant feeling and so they sometimes take some distance from you as they don’t know what to do or say to you.
- Everybody is so busy these days. Even when your family member has no health issues herself, she still will have her own problems and sorrows. If you don’t tell her about your pain she probably won’t come over spontaneously to help out……….
…….unless you ask her to!
Here are the 5 most important skills for you:
Explain what you’re suffering from, what this means for your daily life, and tell it again when necessary, as people tend to forget quickly. If you think this is too difficult for you send them the ‘Letter to a friend’.
- Be clear
Your family members and friends cannot see what’s in your head, so make it clear to them how you’re doing and what you need from them. Tell them about the negative emotions that come with chronic pain.
- Be honest
Don’t exaggerate your pain and don’t use your pain to avoid doing things you don’t fancy. On the other hand don’t pretend you’re better than you really are.
- Be interested
Make sure to be interesting to the other person Let them people know that they’re important to you. Give your friends and acquaintances an important place in your life, as you would with your family. Encourage them to keep sharing their life with you, the good parts as well as the bad.
Ask for what you need, whether it’s attention, support, practical help of all of this.
You can find more and more extended information, dos and don’ts, examples, stories by Anna and other chronic pain patients, ánd people around them, in ‘Coping with chronic pain, a team effort. For You and Your Family & Friends’.
Here is just a pick from the dos and don’ts in the book:
- Explain to people in your outer circle what it means to spend every day in pain. You
might have to explain it more than once, as people have a tendency to forget.
- Recognize that others are busy and might worry about you anyway.
- Nicely, but directly ask for the help you need from a given person. “Would you be so kind as to…” “Could you do me a huge favor and…”
- Tell them what you need. One time you might be needing a rest, the next you might be aching for a nice conversation or a trip outdoors. Tell them clearly.
- If necessary, explain why your family also needs extra attention, help or support.
- Make it clear that you’re doing your best to stay cheerful, but that being cheerful doesn’t mean that you’re not in pain.
- Show interest in the life and toils of others.
- Encourage them to keep sharing things with you, the good times as well as their sadness and disappointments.
- Compliment others when they’re giving you the right kind of support, help or attention.
- Ask for others to be understanding of your occasional sadness and anger, and explain that it’s because of your ailment, and not because of them.
- Clearly indicate that there are some things you can do at some times, but not at others.
- Cancel as few things as possible, unless you’re in really bad shape. Try to go and see where things go from there.
- Be clear and make your request for help concrete. Let others know when they’re doing a good job.
- Let go of friends and family members who, even after doing everything described before this, still don’t understand. Some relationships you cannot save, and you’re better off without them.
“Never forget, you’re still worth being friends with. No amount of pain will ever change that”.
- Act tough and never or only rarely talk about your ailment, or downplay it.
- Keep expecting for other people to see through your act of toughness.
- Tell long and expansive stories about your ailment, trying to make sure that a specific aunt never comes by anymore.
- Feel guilty because you can’t do everything anymore, and constantly apologize and supplement these apologies with explanations of your ailment.
- Complain about not being helped with something, and complain that you’re perfectly capable of doing something yourself when they do help with that task.
- Think to yourself, ‘Never mind, I’ll do it myself’, out of frustration.
- Constantly be defensive or apologetic.
- Complain too much; the other will end up feeling powerless, frustrated or even annoyed.
- Let others pamper you.