As someone who recently moved to a new town and is trying to make new friends, it's not always easy to know when, if, or how to tell people I have Fibromyalgia. Should I be upfront about it? Should I only say something if it comes up? Do I just keep it to myself? There isn't really a handbook for this sort of thing, and it's not always easy to know which direction to go- so what do you do? Tell people the truth and hope they understand, or cover up your symptoms with niceties and excuses?
I used to be very quiet about my Fibromyalgia. I would allude to vague things like, "back pain," "back problems," and "trouble sleeping," but I never really got more into it than that. I started experiencing extreme chronic pain when I was 14, and back then most people didn't understand my vague excuses because pain like that wasn't something their bodies had ever felt; plus it took eight years to get a diagnosis, and let's be honest, there's only so much you can do with "no one knows what's wrong with me," so I just kept my symptoms and my health issues to myself for the most part. I had a few close friends I was fairly open with, and I kept my immediate family in the loop regarding doctor appointments and treatments, but overall I kept things very close to the chest because having people not understand was worse than people not knowing what was really going on at that point in my life, but it also was really hard to only have a few people who really knew what was going on. I felt like it was a catch-22.
As an adult with a diagnosis, things are a little bit different now. People tend to understand things like "back pain" and "aches and pains" a little more; chronic pain is unfortunately pretty common, and with high-profile celebrities like Lady Gaga being open about Fibromyalgia, it makes these conversations easier, but I'm still careful about saying the word "Fibromyalgia" around people. I'm not trying to hide it, but there is still so much that is unknown about Fibromyalgia that I tend to judge the person, place and time, every time, before saying definitively that I have Fibromyalgia.
For one thing, it's hard when you can't answer simple questions like "What causes Fibromyalgia" or "When will you get better?," and for me, there is always that voice in the back of my head that wonders how people will react. Will they understand? Will they say things that they think are helpful but are just hurtful? Will they think I'm just making it up? Will they be open to having an honest conversation about this, or just will they just write this (or me) off?
Over the years I have found that there are some people in my life that just don't need to know, but also that there are other people that really should, and you just have to be willing to be vulnerable with the right people when the situation calls for it.
I have had people take it lightly, scoff a little bit, and be a little uncomfortable with it- but I've also had people have a bit of an "aha!" moment and really open up and ask questions and be incredibly supportive. I truly believe that you just have to think it through- with friends, partners, employers- everyone. If you think someone should know, they probably should. If you think someone won't understand and it's better to keep things closer to the chest, they probably won't and you probably should. If you think someone would understand and be supportive- they probably will! Everyone is different, situations change, and you just have listen to yourself and do what you think is right.
- Heather, Fabulous Fibro-Fighter and FSC Founder