Chronic pain shapes every aspect of the life it taunts as well as everyone in their sphere. From loved ones, friends, family, co-workers… no one is exempt. It can weave a path of destruction in its wake, making a strong person weep, diminishing self esteem and worth and in some cases leading to isolation and despair. That’s why it’s so important to share what it means to live with chronic pain every day. After decades of dealing with its ramifications as a physician and patient we’d like everyone to know:
It’s exhausting. Not just physically, but emotionally. It’s like a constant toothache that never goes away. It impacts everything, draining energy like a sponge till there’s none left. Restorative and healing sleep is alien to most of us. Pain often makes it impossible to sleep soundly, either awakening us with each position change or when we’ve been in one position too long. I often hear just the thought of getting out of bed can seem too much to accomplish. That’s why taking one day at a time. Focusing on each task and then moving on to the next is so important.
It affects our body image. It colors everything we hear, see, touch. Too often we’re sure pain and how it affects us is all people see. We are no longer the intelligent, vibrant, capable person our spouses fell in love with, children looked up to, or bosses applauded. Now we’re just that person in pain, frail and limited. To us and the world. Protective walls are erected and intimacy is lost. That’s why presenting a different picture is so important. That smartly dressed, well presented person staring back at you in the mirror can reflect who we really are, helping us to “fake it till we make it.”
Advice isn’t helpful, support is. If I hear one more time about an article a well meaning friend saw on the internet touting some type of quick fix or a supplement or treatment “a friend of a friend of a friend got that helped them,” I may not remain civil. They mean well. But they just don’t understand what they’re really saying is we just aren’t working hard enough to get rid of the pain. As though there’s some magical wand out there if we just keep looking. What really matters is their unconditional love and support.
Just because I look good…We all want to appear in control, put together, ready for anything. That’s why putting on a good face, pretending the pain doesn’t exist every second of the day becomes a default mode. No one wants to be pitied or diminished so we suffer in silence. But that doesn’t mean we aren’t suffering. Don’t take our silence as a sign the pain is gone. That’s not possible. Honor our brave presentation while remembering to ask if there’s anything we need.
It’s constantly changing. One minute it can be tolerable, the next overwhelming. Not knowing how we’ll fare after a few hours in a theme park, walking the zoo, eating out, going to the movies… fills us with anxiety and fear. I remember celebrating my daughters birthday at Disneyland just before the Pandemic shut everything down. In the years since I’d been there last they had expanded into the parking lot that had allowed me to park just feet from the entrance. Now I had to take the tram. Worrying how I’d get back to the car after a long day and night consumed my thoughts and threatened the memories I was there to enjoy.
We aren’t ignoring you. Sometimes the pain, anxiety, and worry is so great it’s hard to turn off, let alone express. We don’t want to sound like we’re whining. We don’t want to be shot down for “anticipating something that may never happen” because it’s happened enough times to leave an indelible mark. So we withdraw, set up a protective shell and fortify our reserves for the coming onslaught. Seeing the signs the best response is patience. An open, honest conversation without judgement can quickly diffuse the situation.
Honor our needs. Too often we allow pressure, shame or expedience to decide our fate instead of honoring what we know we can or should be doing. It always ends poorly for everyone. Understanding our limits, and when they’ve been hit, is pivotal. It starts with us. No one can read our minds. Sharing is the only way to head off a catastrophe. Not comfortable expressing yourself in a group? Have a key phrase or word that tells a friend, spouse, loved one it’s time to leave. Mine was bathtub. Anytime I said I couldn’t wait to get home and crawl into a bathtub I was ready to call it a day.
We aren’t making a mountain out of a molehill. This is an incredibly demeaning and patronizing insult in any setting. Telling anyone they are “ blowing things out of proportion” is never conducive to a safe, healthy or productive conversation. It’s a way to shame and dismiss. If you can’t help this person understand how damaging those statements are, maybe it’s time to set boundaries or limit exposure.
We struggle to find a balance. We all feel overwhelmed and exhausted. Everyone juggles multiple balls at once. Keeping them in the air or rotating through a cycle of priorities is a constant struggle. But add to that scenario chronic pain and the juggling act has a few more balls. We are constantly having to organize and prioritize with our pain in mind. How do we manage to work a long day and still get through our child’s play? Sew their costume? Get them to school in the morning or home in the afternoon? Is this the moment we ask for help? Say we’ve had enough and pass?
We value your help. Having a strong support group is imperative. Those you can share with, depend upon and turn to without feeling judgement, shame or attitude. Help can often feel like a four letter word, implying failure and frailty. Perceptions we have to deal with and overcome if we’re to keep having people in our lives who are there for us. We all need help to get through the day. From the co-worker who gives us a lift when our car breaks down to the parent who drops off our child when we’re working late to the pizza chain who delivers when we are too exhausted to cook, having a network in place for all contingencies is a way of life.
Financially difficult. Pain affects everything. Maintaining a job, getting to work for set hours can be impossible for those with debilitating chronic pain, adding money issues to a long line of problems to contend with. It’s not laziness or a desire to sit home and eat bon-bons that keeps us from working the hours required to survive. Many patients are finding it easier today because more employers are offering an at home option where frequent baths, position changes, even naps can be incorporated into the day.
Don’t stop asking us out. Often people feel put off or strung along by cancelled outings, polite responses like “ not this weekend” or plans that need to be changed due to pain. It’s not you. Please keep asking. You’re desire and willingness to keep asking us out means so much. And for those who are lucky enough to have these special people in our lives don’t take them for granted. Make it clear, repeatedly, how much you appreciate their persistence.
A good day doesn’t mean we are faking it the other days. I could even change the heading to a good minute doesn’t mean we are faking it the next. Pain can change with just a wrong move e.g. bending over to pick up a nickel, or sitting, standing and walking too long. Or, we’ve just run out of steps. Just because we “look fine” doesn’t mean we are lying, or manipulating, or faking. Too often this is the reaction from people who can’t understand our pain can change in an instant.
We feel guilty. Guilt and shame are constant companions. Not making it to our child’s little league game. Not being able to clean the house as much as we’d like. A co- worker who had to work more hours because we couldn’t. Feeling we aren’t pulling our weight or there for others is a daily struggle. Only when we and others in our life accept our limitations can we stop feeling guilty for something we have no control over.
Blamed for our own pain. When I was raising my little girl there were too many times I was forced to do something that could jeopardize my pain. Picking her up when she needed to be consoled, moving a potted plant that was leaking, replacing batteries in the fire alarms on the ceiling…I remember being attacked by a family member for causing my pain when I “ knew better.” As though I hurt myself on purpose! Or well meaning friends who were sure I really wasn’t interested in getting better because I never saw the chiropractor they swore would magically resolve my pain.
These insights can help others understand what we deal with every day. Chronic medical issues such as pain, diabetes, and heart disease require a village. Knowing we aren’t alone, isolated, disparaged or diminished can make the difference between surviving and living with it.