What We Need
What do sufferers from chronic pain need? There’s not a drug that takes it away. We need a cure, yes. We might be aided by therapies of various kinds, yes. But the pain goes on and life would be impossible with the pain, without some support from others. I’ve identified what I think are the basics, and some ways that you can help.
It’s tough to make new friends or keep the old when we have almost no energy to put into the relationships: when we’re in too much pain, or too exhausted by pain, to go out and participate in social activities. We might be able to get some friends to come visit us, once or twice, but friendships fall off when there’s no reciprocation. As weeks and months go by without us returning their visits, our friends stop coming by.
Even when we are able to be seen, we’re not very attractive. Our energy is dulled, our sparkle is dampened or utterly erased by ongoing illness. The difference in the way people receive us is profound. With faces drawn and eyes full of stress, when we are able to make it out into the world we meet far, far fewer smiles than back in the days before chronic pain, when we were able to present ourselves with some verve.
I don’t know of a solution. Get by with fewer friends, savor and treasure and wring every last drop of appreciation from each small human contact, cherish memories and hopes? Beg and plead?
You can help by being steadfast friends. Remember us as we were, accept us as we are, and be persistent in contacting us. Don’t let us become isolated. Find ways we can contribute so we don’t feel that the relationship is all take, on our side, and no give. Let us know that we’re still a valued part of your lives.
Some of the difficulty of keeping friends and family in touch could arise from the vast number of favors we need, but we need them and we are placed in the very uncomfortable position of having to ask for them, or let our lives fall apart around us. Some of us may qualify for in-home helpers but the funding for those programs is limited, so we may get perhaps one grocery run per week, OR one load of laundry and dishes, OR a meal cooked, but not all of the above. Even if we had help with all of these things there would be more: a hand with sorting through and understanding and paying or sometimes questioning the bills, help washing the car if we’re so fortunate as to still have one, a trip to the library, a ride to the doctor, some heavy things put into or taken out of storage… so many needs arise, constantly, and to have to ask again and again for help would embarrass a saint, so we bumble through, make do, or often do without.
You can help by offering help. Know that at any moment there’s a long list of favors we need, and some of them are very small. You could pick up our mail or take a check to the bank for us, and that small favor could save us the hours of increased pain if we’d had to struggle through that small errand for ourselves. Sometimes, we might not realize that we need something, or we might be too embarrassed to ask, so if you perceive a need, let us know that you can help. Or make frequent and open-ended offers: not, “is there anything you need help with?” because there always is. “What do you need help with today?” Please ask.
It comes down to brain chemicals: the strongest cure for pain is pleasure. When our brains are busy experiencing pleasure, we experience less pain. We are strengthened to go on by every moment of pleasure.
Alas, we’ve lost a lot of our sources of pleasure. The hike or bike ride we used to take may be beyond our abilities now. Dancing or playing a musical instrument, even picking up a novel and getting lost in its pages, can be impossible. But we need to find every possible source of pleasure and make time for it, giving it the very highest priority. Without some relief from pain we can’t go on.
You can help by dropping off some movies or books on tape, calling with a funny story, emailing some photos of your baby niece with mashed peas all over her face. Any little thing that might bring a moment or a couple of hours of smiles with minimal effort can help enormously. Don’t be put off if we’re not up for it this time. For some of us, going to a movie would be too exhausting, and for others, or at other times, it would be just the ticket. Try again another time, try another thing, help us find out what we’re able to enjoy and help us get our fixes of it.
Whether through prayer or meditation, the comfort of a companion animal, soothing music or environmental sounds or complete quiet, we need to find our way daily, and some days many times in one day, to a point of complete rest. Pain may be waking us multiple times each night. Even if we’re getting good sleep, pain wears us down throughout the day. The smallest activity is a huge effort. We need ways and places to rest.
These can be easy enough to arrange at home, but very tough when we’re out and about. If we have cars, they provide us a place of privacy and shelter where we can tilt back a seat and take a nap or just let go to our tears or our chants or our prayers. If we’re reliant on public transportation it’s tougher. I have sat in a quiet corner of the library to cry when I couldn’t make it another step of my way to the grocery store. I’m reminded of the days when I had an infant in tow and needed a quiet place to nurse. A park bench, a nook in a hotel lobby, a bus shelter? Places where we can find a safe and sheltered spot just to sit are all too few.
You can help, again, as above, by finding out what works for us and helping provide it. Maybe you can share a meditation CD, or some comforting restorative yoga postures, perhaps even an occasional gentle and relaxing massage. Perhaps if we rely on companion animals to calm and comfort us you can help with their trips to the vet, their grooming or their walks. You can be active in advocating for public places of rest. Spend a day in your community being aware of the resources. Where would you go if you absolutely had to have a place to sit down, right this minute? What if it were raining, or night? If it’s on our route, maybe you can make your home available and make it clear that we don’t have to be up for a social visit but can just stop in to sit down and rest when we need to.
I don’t know where it comes from. It’s not based on anything tangible in the present reality. This disease could go on until I die, and my living circumstances may never become easier. I may not find a home for myself and my children that I can afford and maintain with what little funds come to me through public assistance, but I have to hope. I have no choice. There are times when illness makes me feel like such a complete failure, that I’m sure my children would be better off without me: if I were dead someone would have to step in and care for them and they’d be almost certain to do a better job than I’m able to do. Yes, I do get that hopeless.
But I pull out of it, and I guess the reason is love. There’s still enough rational thought left to me even in the darkest moments, to recognize that suicide would terribly hurt those I love, and the thought of their pain is unbearable. So for those I love I cling to hope and keep going, knowing things could get worse, but imagining that they might just get better.
You can help by being available in the bleak times when hope deserts us. Maybe there are inspirational words that have helped you through exhaustion and despair, that you can share, and if you can offer them without pressure they could be welcome supports. Maybe there will be a moment when a squeeze of your hand will pull us through, or your message on the answering machine, even though we’re not able to pick up the phone just then, will remind us that somebody cares. We might cry on your shoulder if it’s available, or we might not cry on it but be made stronger just knowing that it’s there. Maybe there’s a little talisman you can give: a lucky coin to keep in our wallet or a pretty hanky to cry on: some silly thing can help remind us that we’re not abandoned. Remind us of love.
We will fail you. Just don’t blame us. We became ill through no fault of our own, and our continued illness is not for lack of effort to achieve wellness. We don’t want to be this way. We don’t want to be so needy or screw up in so many ways. There’s plenty of blame, shame and regret in life, and in dark hours be sure we’re heaping it on ourselves, however undeserved.
You can help us accept where we are, and work with it, if you do so yourself. Cut us a whole lot of slack. Help us not to be embarrassed at needing help, by being gracious in offering it, letting us believe that we're somehow doing you a favor by accepting your help, and not expecting any return (though we long to somehow repay all we receive), and accepting any way in which we can indeed help you in return.
We look normal. We show no outward signs of illness. If we have a handicapped placard on the car we might get glares from people who wonder where the heck is our wheelchair. We need special assistance and concessions, but it can be very unclear to others that we need them. Even from our own selves we might not always get the understanding we need, and we might continue to expect and demand too much of ourselves and not see why we can’t deliver.
You have already helped, by reading this. Please share this or any other information that helps people understand what it is to live with chronic pain, and how they can help the sufferers.