By Sarah Ann Shockley
So many caring people are anxious to help their friends, relatives, and co-workers who are living with chronic pain that they are quick to offer recommendations and words of advice. But is more advice what people in pain really need?
I would suggest, most respectfully, that it is not.
Chronic pain is a complex condition that is not easily remedied by typical treatments, supplements, or exercise routines. While we appreciate everyone’s sincere desire to help, what we require usually isn’t more advice. To support us in our healing, here’s what we would ask for:
Please understand that everyone in chronic pain is doing our utmost to heal. We are not malingering or making it up or exaggerating. We are not lazy, or melodramatic, or trying to get more attention by being ill. In fact, most of us understate our situation in order not to make others around us feel bad. And please respect our intelligence and tenacity. If we have been in pain for any length of time, believe me, we’ve tried most of the treatments, both alternative and traditional, that you have ever heard of. And then some.
2. A Free Pass
Just being in pain is hugely exhausting and we are using most of our available energy and personal resources just to get by. Getting out of bed in the morning and lurching through another day may be all we can manage. The fact that we found the energy and wherewithal to make one important phone call or fill out a necessary medical form may be a major triumph for that day.
3. Understanding That We Can’t Be Normal
Most of us are sleep deprived and under a great deal of stress trying to handle work and parenting and relationships and self-care and medical demands while in pain. We don’t have any reserves left over to participate in life at normal levels. We are not being selfish or acting like victims if we have to say no to a lot of things. We are not doing this to make you angry or to get attention. Just having a conversation may take all our available energy. Imagine having pain in your body and the flu and jet lag and severe sleep deprivation all at once. It can be like that most of the time for us.
4. Allowances for Our Cylinders Not Firing
People in pain simply don’t have the brainpower that we normally would. All our available stamina is going into healing and into living with pain. There doesn’t seem to be a lot left over for our noggins to draw on. We forget things easily, we can’t find the right words sometimes, and sometimes our brains go offline for a few moments and we simply blank out. We have trouble focusing and we may not be able to make sense of complicated instructions. Actually, we may not be able to follow any instructions. Just imagine finals week at college. You know, the last day, after not sleeping all week? Remember how brain dead you felt? Some of us feel that way every day.
5. Compassion and Trust
What we really need from you is compassion, understanding and trust that we are already doing our best and to refrain from asking us to hurry up and get out of pain. We need you to not be so scared of your own pain that you refuse to allow us to experience ours, or feel like we have to hide it and not speak of it. For whatever reason, we are still in it for the time being and, even if we wanted to, we can’t move out of it to make you feel better. Believe us, we certainly would if we could. We wish we could be more available to you and to our own lives, but we can’t at this time.
Instead of trying to help us by offering methods for healing, we are in need of you simply being with us, being there for us when you can, and trusting us to find our own individual path through pain. We will let you know if we need more than that. We appreciate your loving-kindness, your gentleness and your compassion most of all, and these, really, more than any words of advice, are the most healing things you can offer anyone in pain.
A native of Connecticut, Sarah Anne Shockley is a multiple award winning producer and director of educational films, including Dancing From the Inside Out, a highly acclaimed documentary on disabled dance. She holds an MBA in International Marketing and has worked in high-tech management, as a corporate trainer, and teaching undergraduate and graduate business administration. As the result of a work related injury in the Fall of 2007, Sarah contracted Thoracic Outlet Syndrome (TOS) and has lived with debilitating nerve pain since then. She has been a columnist for Pain News Network, is a regular contributor to The Mighty. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain and other books on living with pain, and currently resides in the San Francisco Bay Area.