This list is grounded in my experiences of several decades of living with chronic illnesses, which bring both chronic pain and short-term episodes of intense pain. During that time I’ve experienced some not-so-useful support, and a lot of quite excellent support (due to: my learning what works & what doesn’t for me, talking with/reading other disabled folks on this, conversing with my support folks, and their loving willingness to listen and adjust their support). And these are the things I’ve learned about useful support for folks in pain:
- Ask them what they need. And listen, and take it in, and follow their requests to the best of your ability. Ask often, at various times and pain intensities, because the answers can change. And only follow the rest of these guidelines if they don’t contradict what you’ve already been told. Your loved one is always the expert on their pain experience and the support they need. With that said — these are in general useful things to do/not do:
- Don’t freak out. Even though it’s likely hurting you to see your loved one suffering, this is affecting them much worse than it’s affecting you. Give them the space to feel their feelings, and let them be at the centre of what’s being attended to. If you are exhibiting strong emotions, they may feel like there isn’t room for theirs, or like they have to take care of you first. Don’t do that to them. Get support for your feelings from someone else in your care circle.
- (If you’ve asked and they’ve said they want it,) offer empathy and comfort. Affirm that it’s shitty to have to deal with pain all the time, and even shittier when pain management doesn’t work well enough. Say that you mind that this is happening to them. The world out there treats disabled and ill folks like we’re trash, and like our pain doesn’t matter. It can be important to hear that it does matter to our loved ones. Offer sympathy noises, lots of hugs, cuddles, head or arm petting, back rubs, soft blankets, fluffy pillows, yummy taste treats, or other things they tell you comfort them.
- Be matter-of-fact about what they’re going through. Try not to flinch or flail every time your loved one whimpers or moans or screams or gasps in pain. This is their current reality; you are there to help them through it, not to provide commentary on how unbelievably awful their situation is, and how you could never ever cope with it yourself. Normalise it. Talk about the pain as if it’s a normal, if unpleasant, body thing. (Currently, for them, it is.) Discuss their pain-scale rating (if that’s a thing they do; not everyone loves the pain scale), or listen to them tell you about how the pain feels (e.g., like my jaw is being amputated, like someone is drilling through my arm), etc. Maybe make jokes about what’s going on — if your relationship usually includes jokes as part of support. If they start to scream — ask what you can do to help, and honour what you’re told. If they don’t answer your question, don’t push. They’re busy screaming or stopping themselves from screaming; they’ll attend to your question when they can. If their screaming interrupts whatever you’re doing together (watching a movie, reading out loud, talking), pause your video/talk, and continue when they indicate they’re ready to keep going. Don’t make a big deal of the fact that there was screaming. Normalise it. And if you already know that you can’t help, just lovingly be there. They’ll likely appreciate it. Intense or long-term pain can make a person feel quite helpless, and isolated from other humans. Being there, with love and acceptance, helps contradict those messages. Which brings me to:
- Love them. Love them so much. Show that you love them, that they are special to you, that their well-being matters to you, as much as you can. Say tender things; smile; touch them gently and comfortingly if they’ve consented, respond to their needs. Convey that you love spending time with them, that you’re not ‘enduring’ being with them, that they are still that person you love so fucking much. They need to know this. Pain isolates. Pain lies about how alone we are.
- When a pain storm hits, be their calm centre. The more intense your loved one’s pain, the more they’re likely to need you to be the calm and unflapped one. If you are easily flapped, try to fake the calm? Speak slowly, in a lower register than usual, if you can. That can convey calm and groundedness, even if you’re not feeling it. When in a lot of pain, we often need something/someone steady to hold on to, to not lose our minds. Be that rock, that tree, that tether, for your loved one as much as you can. Allow them to hold on to you, or to the sound of your voice. Ask short questions about their needs; say simple loving/affirming/reassuring things. (E.g. “This will ebb, just like it has before. Only a little while longer before the painkillers kick in. In the meantime, squeeze the fuck out of my hand if it helps.”, or “I love you. I love hanging out with you, always, even when you’re screaming.”)
- Become literate with their pain remedies, and how they’re used, and their safety limits. This is especially useful if the pain is long-term. Offer to help keep track of their pain meds, so they don’t overdose — and also don’t underdose. Offer to remind them to take their meds or use their other remedies; offer to bring them relevant items when needed — and honour their answers to your offers. Be a help; never manage their pain for them. They’re having to deal with enough helplessness; don’t increase it.
- Ask what would help them feel in control of their experience. Then help, as much as you can, for them to get it, or to get access to resources that would help. Don’t judge their needs. If, for example, they manage the worst of the pain by causing pain elsewhere in their body (by scratching or biting or pinching or squeezing or putting pressure on other parts of their bodies; this can help lessen the intensity of the pain signals), just accept that this is helping them. If they want a morphine pump, don’t go off on a tangent about how you feel about morphine or implanted drug pumps. If they want to masturbate away the pain while watching porn, you don’t have to stay in the room with them if it’s not your thing, but don’t judge or try to get them to do something else. Etc. You’re not inside their skin; you don’t get to decide how they survive this.
- Have fun together. Consult your loved one on what fun activities they’re up for (that are also things that you like), and then plan and execute them — ideally every time you hang out. Fun is super-important for their quality of life while they’re in a lot of pain, and important for the quality of your relationship.
- Don’t push yourself past your limits. Assess what kind of support you can do, and how much, and offer that with a glad heart. But you won’t be doing anyone favours if you offer or agree to do more than you’re up for. If you ignore your limits, you’re likely to eventually become resentful, or otherwise negatively reactive, in a way that will rebound on your loved one. And, while we’re on this topic:
- Always hold your boundaries. If your loved one is unkind to you, or manipulates/pushes you in ways you don’t like, it doesn’t help for you to tolerate it. Say (lovingly, gently, but say it) that you don’t want to be spoken to that way, that you’re not okay with guilt trips, that you heard what they said as shaming, etc. It’s important that the pain not warp your relationship, that it remain a safe place. Treat your loved one the way you have before: as a competent human who can absolutely handle hearing that you didn’t like something they did. And of course, as always when communicating, be prepared to hear that what you interpreted as shaming or a guilt trip was meant very differently; in which case, discuss the issue till you agree on what boundaries or information-sharing would help create less ambiguity. If they say or do something mean while in severe pain, and you set a boundary about it, they might not remember that later and you may have to repeat yourself. Do it. Honour your relationship by allowing it to be safe for both of you.
- Help your loved one grow their support circle. Don’t be the only one they rely on; that’s a recipe for disaster if/when your limits are breached, or when you can’t be available. With their permission, reach out to their other loved ones, and ask them to be part of the support. Explain what might be needed or helpful; sometimes folks don’t offer support because they have no clue what to do and are afraid of being useless or feeling overwhelmed. Research professional and peer supports available — are there chronic pain therapists or support groups in your area, that your loved one could go to? Are there pain doctors, naturopaths, acupuncturists, osteopaths, etc. who could help figure out the best pain remedy picture for them? (Even if they don’t have a lot of money, sometimes it’s possible to access free or sliding-scale acupuncture or naturopathic care. Network with other poor folks, and find out if those supports exist in your community, and what has to be done to access them.) Support your loved one making new friends, especially among other chronic-pain folks. They’ll need people who can more closely relate to their experiences.
- Do great self-care. Do it like you’re trying to win the self-care championships. Make it your first job. Heavy support like this is hard work, and your psyche and your body need extra attention. Serious self-care will help you have quality of life, especially if you’re stressed by worry about your loved one, and it will help you be an effective support person for them. (Everybody wins.) Some important self-care areas: Have support people of your own, and access support from them regularly. Feed and hydrate yourself well. Get good rest. Do fun things every day. Connect with other humans in nourishing ways. And also give yourself quality alone time. Do things that nurture your soul. Move your body in ways you enjoy. Make sure you get good health care, if possible. If it’s not possible to access free, paid, or bartered-for health care from others, educate yourself on do-it-yourself health care (e.g. herbalism, nutrition), and support your health in that way.
[Edited 10 II 2016, to fix a few syntax problems.]