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Image description: rear view of two women sitting on a bench by a harbour. One woman is resting her head on the other’s shoulder.

Pain is invisible. Which makes it hard to explain, and difficult for others to understand. I talked to the chronic pain community on Twitter and Facebook and they shared what they would like from others when in the grips of a lot of pain (quotes may have been edited for length and style). The tips fell into six categories of what to do when a loved one has chronic pain. If you are the one who is battling the pain, it might be easier to just point to this post and say #6, #3, or whatever applies.

Image description: protrait-oriented Pinterest image of the two women at the harbour. 

Be gentle

Image description: speech bubble with quote: “A hug and the question “how are you feeling today?” Listening intently for whatever response shows up.” By @forestwalker2

When someone is in a lot of pain, it can make their body and soul feel raw and vulnerable. Nerves get overstimulated, so that every touch is more intense, and every sound much louder. Be gentle in your .speech and careful in your touch. This might make you feel nervous that your touch will hurt the person. Make sure you have a conversation about touch when they are not flaring quite so much. Because when one’s body is overwhelmed by pain, it can be heartbreaking to no longer be touched.

Be present

Image description: two speech bubbles with quotes. One “I love my husband to be in the same room, possibly reading or doing a crossword and gently present” by Joy and second I just want to be left alone. Hubby checks on me about every hour and a half. Asks if I need anything then leaves. I love that he understands.” by Judy: 

Sometimes, there’s an emotional withdrawal, or even leaving, if not outright, then when the pain gets really bad. You might feel helpless and a bit scared in the face of the intensity. You can help by giving this person you care about what they need and you don’t have to guess. Ask them. Some people like to be left alone when they feel like crap, others need you near them. It can be as simple as doing your own thing close by.

But never hover. That just adds stress to an already stressful situation.

Be helpful

Image description: speech bubble with quote: “1) Help me gather all the things (book, snacks, water, tv remote). 2) Get me to my room (bed or recliner). 3) Let me be alone except replenishing supplies like ice packs, a quick pat on the head, and a reminder that this too shall pass.”.” By @EPrestonJ

You don’t have to fix the pain, but realize your helpful role is more a supportive one, offering purely practical help. Getting up to fetch the things they need to be entertained or have the pain eased at little will only create more pain, so do it for them. Let them know you are there when needed. Check every now and again if they need something specific. And while you’re there, put a gentle hand on their shoulder or drop a kiss on the top of their head — or lips, that works, too.

Be patient

Image description: speech bubble with quote: “Patience for when i can’t find my thoughts and to ask me if I need help, not assume the kind of help that I might need..” By @crackedbetty

Pain takes up a lot of room in a person’s head. That’s why someone who has high levels of chronic pain may have what’s called brainfog. When you add powerful painkillers to this, it can get pretty bad. It quite literally feels like your brain is filled by peasoup fog, obscuring names and memories, and sometimes even the words that put together speech. If the person has trouble remembering what they need from the grocery store, where they put their glasses, or your birthday, take a deep breath and be patient. Wait until they get there, or them to describe something in other words — I’ve been known to talk about the big white, cold thing in my kitchen — or just wait until they are feeling better. What matters between you is love and caring. The rest will come.

Be respectful

Image description: speech bubble with quote: “Need them to sod off if they don’t understand.” By Jennifer

This moment is not about you, it’s about the person you care about. Don’t impose your opinions and feelings upon it. For instance, keep your own sadness about the situation to yourself. Often, when someone is in pain, they are trying very hard not to fall apart because all they had left is the ability to bear what is happening. Your sadness will make everything collapse. Don’t assume you know what they need or that they are not doing the best they can to treat their condition. If you want to understand specifics, ask if it’s okay to share some questions, but make it clear it can wait. If you cannot find it in your heart to be respectful of their pain, remove yourself from the situation.

Be open

Image description: speech bubble with quote: “I’m always warmed and relieved when friends or family just show up at my door with love and goodies when I’m flaring. Most likely there’s something I could use help with, from Biofreeze on my back to cleaning the cat box. We all like to know people care and we haven’t been forgotten when we have to shut ourselves away to rest and recoup.” By Deserae

Those of us who live with pain have one burning wish: for you to understand, and if you can’t understand, for you to accept what’s happening with us. It can be very difficult to start that conversation. Chronic illness and pain can mess with your mind, making it hard to find the wherewithal to take on educating others. So why don’t you start? Tell your friend or loved one that you want to understand and then listen — not just with your ears, but with your heart, your soul, and your body.

The most important thing to remember is that everyone is different. When I have bad day, I need a gentle touch, for the person to say “that sucks, I’m sorry,” and the willingness to do practical things for me. That’s all. If someone is too nice to me, I’ll start crying and that just makes things worse. Others need those tears and need your support while they cry. Keep asking questions — though perhaps not on a very bad day — and together, the two of you will figure it out.

Image description: speech bubble with quote: “Please Listen with your whole body. Not just your ears.” By Linda

If you care about somebody who lives with pain, how do you support them? If you have chronic pain, what works for you?