What I Wish Others Knew

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.

What they don’t understand is that I’m not asking them to fix me.

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:

  1. When I talk about my pain, I am not asking for pity. Instead I am asking for compassion, an ear to listen, or arms for a hug.
  2. At this point, I have figured a lot of things out. I don’t need to be told to try “try my heat pad” or to “take it easy”. I need to be told that I am strong when I feel weak. I need to be reminded that I am strong for doing so much, while feeling this way.
  3. If they are not sure how to be helpful, they can just ask me what I think might help. They could focus less on trying to make my pain go away, and more on how I am feeling about it. They could focus more on being compassionate, and patient with me, and reminding me that I am not a burden for having chronic pain.
  4. I would like for people who know me, and know about my pain, to take some time to consider what it’s like to be in my shoes and live in pain every day. Like really consider what it would be like, and the mental strength it takes to live with and accept that. Not so that they can feel bad for me, but so that they can understand my perspective, and why I act the way that I do.

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 have realized that if I want people to be able to support me in the best way possible, I need to be able to communicate with them about my needs.

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.

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Last Updated: September 22, 2020