In my experience, most people don’t have a good understanding of what chronic pain is. The meaning of chronic pain is not common knowledge. I have written a few times before in this series about how I had always learned that pain meant something was physically wrong with me. It was hard enough for ME to understand that I could be in so much pain when I appeared so healthy, let alone for someone who has never experienced it before.
Most times, when I tell someone I have chronic pain, they begin to ask if I’ve seen this type of specialist, or tried that type of therapy. They rack their brains for suggestions and offer me their condolences.
Five years of doctors’ appointments, back braces, creams and medicines, and physio regimens, haven’t been able to fix me. If only they knew how hard I have tried to get rid of my pain already. If only they knew how frustrating it is to have people sound off suggestions like this, as if I’ve never thought of trying them before. As if only I tried harder, I wouldn’t have this problem.
If I am telling someone about my pain, whether it’s simply that I have chronic pain, a complaint that my pain is really bad today, or a more thorough explanation, there are only a few reasons I am telling them. One, I am having a hard time and need someone to talk to about it, or I just can’t suffer in silence anymore. Two, I am trying to open up, and help them understand me better. Three, I am trying to explain why I’ve missed something, or why I am acting a certain way, so that I do not come off as lazy or disinterested.
When I tell people about my pain, there are some things I wish they knew:
At some point though, I came to the realization that I cannot expect people to read my mind. I know, mind-blowing RIGHT?! But seriously, I have come to realize that most of the comments that lead me to be frustrated or annoyed with people, are coming from a place of good intention. They simply do not know any better, and are likely trying to help.
I need to get comfortable saying things like, “I just need to vent for a minute”, or “I need you to remind me that it’s okay to take a break”. I also need to be able to tell them what is not helpful. I know that it can be a difficult or uncomfortable conversation, but for me, it has been so worth it. I find that people are more willing to hear it, if I remind them that I know their words are coming from a good place, but that I am simply not receiving them well. And by offering them examples of what can be better, hopefully they will take that into account for the future. I have some amazing, supportive, wonderful people in my life. I am so thankful for the ways that they support me, and listen to me. Even so, communication and constructive dialogue about pain and what support looks like are so important, and can make good relationships even better. I know that we do not always want to talk about pain. However, talking about it can help everyone feel more understood, and is the starting point for problem solving.
I am looking forward to your comments, further ideas and suggestions: the survey will take less than 3 minutes.