“Trust” is an important word when dealing with family and others who might provide support. They have to trust that I’m feeling what I’m feeling, even when they can’t see it. This was particularly difficult for my husband in the beginning—as I think it would be for anyone—because I could feel the pain, but it didn’t look like anything was wrong. Sure, I might be limping or wincing in pain or holding my wrist at an angle because it hurt, but there was nothing else to see–no cut, bruise, swelling, bone sticking out, atrophied muscle, or even reddened skin. Living with me over time he’s become more understanding simply because he’s been around me enough. He believes because he sees fibro’s impact on my life.
This is probably part of the reason why I don’t tell too many people about my condition, and am even hesitant to discuss it with my extended family. If people can’t see it, and they don’t have any experience of the pain of fibromyalgia themselves, then they have doubts in your story. I know I’ve felt this way myself and have felt slightly shamed for doing it. I find myself saying, “But that just sounds crazy!” To be fair, some of the things people come up with are too crazy (ghosts communicating through the fuzz on a TV, for example). I worry that they’ll say the same thing about me and my condition. The research being done into fibromyalgia is more scientific and reliable, but I fear that people may pick it apart if they’re already in the mindset that fibromyalgia isn’t a real condition because we can’t yet identify a cause the way we can locate a broken bone or a virus. I don’t think we have to be able to identify the exact cause to believe people when they feel it; I don’t think everything that goes wrong with human bodies even has an easily identified cause. But people want a cause you can see.
So I keep my condition close to my chest, and I continue to write here to do my own sort of outreach to explain how fibromyalgia is real