Once I had accepted the fact that chronic pain would be a part of my life for the foreseeable future I knew there would be many things I would have to adjust to and many changes I would need to make in my life. One challenge that I didn’t anticipate at first was simply learning how to communicate to others about my pain. It became very depressing to have anyone ask me about my health. If I answered honestly the typical response was something along the lines of “Oh I am sorry, that sounds so horrible.” While I knew logically people were just trying to be sympathetic no one wants to repeatedly hear how “awful” or “unfortunate” their situation is. I don’t see my life as “horrible” and I don’t want others to see it that way.
Occasionally I would get the opposite type of reaction; people who would brush off my comments and just cheerily say “Oh you’re young, you’ll get better eventually.” While the optimism was a refreshing change it was frustrating to me to realize that some people just didn’t understand that age and appearance are not always related to your health. Sometimes people have to face the fact that there is no cure, there is no “getting better”, the best option we have is learning to manage our chronic illness.
It became so depressing to me to admit to my level of pain that I just began hiding it and pretending I was fine regardless of how I felt. While this effectively avoided the unpleasant conversations I had become so sick of, it quickly caused other problems. I pushed myself to do too much at work causing myself more pain and limiting my ability to do anything besides work. The cycle of increasing pain then lead to me doing a poor job at work till I got to the point where I ended up in the ER due to severe muscle spasms that left me unable to to even bend forward. I then had to admit that I really wasn’t “fine” and I needed help completing some of my tasks.
I realized at that point I needed a better way to communicate with others about my pain and physical limitations. The first part of that involved me managing my expectations of other people’s reactions and their understanding of my situation. For someone who doesn’t live with chronic pain it’s hard to imagine what it’s like to be in pain on a daily basis. Pain is something we all experience but for most of us is a temporary thing that we can get rid of with an over the counter medication or just deal with till it passes. Some people may be unsympathetic towards people with chronic pain because they literally cannot imagine pain that doesn’t eventually get better. Other people may overreact because pain is so unpleasant to them that they can’t imagine how anyone could live with chronic pain. Now when I have to discuss my pain I remind myself that I am likely to get a response that I don’t want to hear and that’s ok. Someone else’s perception of my life isn’t what’s important, it’s my perception of my life that affects how I feel.
I have also learned that while honesty is important there’s a limit to how honest I need to be with people. At work for example it’s important for me to communicate my limitations to my coworkers so I don’t end up hurting myself. If I’m having a bad day and need help it’s important to ask for help. Personally I believe it’s also important to let people know when I’m having a good day and can do more than usual. That way people understand that me asking for help simply isn’t a laziness issue, it’s just that my pain levels fluctuate so my physical limitations are not always predictable.
In other situations however my pain level may not be relevant and in those cases I either avoid the subject or if I can’t I paint a more positive picture of my reality. When seeing friends for example most will ask me how my back is doing. If I’m doing well enough to go out then there’s no need to draw attention to whatever pain I may have, so I’ll respond with something like “Oh I’m feeling pretty good today” and just end it at that even though “good” may mean a dull ache in my back versus sharp stabbing pains. Limiting my conversations in this way to the more positive aspects of my health not only helps me feel better but also makes others more comfortable being around me. Let’s face it, pain can be a depressing subject and no one wants to be around someone who’s negative all the time.
These simple changes of managing my expectations of others, being open about needing help to the right people and being as positive about my situation as possible has made interacting with others easier. There will always be challenges that come with having chronic pain but taking the time to learn how to best communicate with the people in your life is important. Be honest, be positive, and if needed seek help from a professional therapist or counselor. Maintaining good relationships with friends and family is important for everyone and especially important to those of us who need extra help in our lives.