The thing I hate even more than the constant, all over pain of fibromyalgia is the isolating effect it has. Chronic pain isolates you from others. People try to empathize with what you’re going through, but if they’ve never experienced chronic pain themselves, then they can’t. Some people can make a pretty good guess as to what you’re experiencing if they’ve had a bad injury resulting in a lot of pain, migraine headaches, or something else in this vein. Others don’t even have that much insight.
Chronic pain cuts you off from others because they can’t truly understand what fibromyalgia does to you unless they have it too. Chronic pain creates this wall between you and the world that only shared experiences can bridge. You can relate to your friends, family, coworkers, etc., about work, kids, pets, food, activities, etc., but not about the huge part of your life that is chronic pain. That part of you, the part that is always on your mind and takes up a big part of your day, they can’t understand. To me this is both a good and bad thing. Good, because I would never wish this kind of pain on anyone. Bad, because no one understands that huge part of your life except others who suffer from chronic pain or fibromyalgia. You are alone in your pain, even if you are surrounded by people.
At my worst, I felt like my only connection to the “outside world,” as I began terming it, was my husband. He would hang out with friends and coworkers and update me with all the latest goings on. While he was out, I would lay in bed in pain, trying to rest. I didn’t even feel connected to my coworkers, even though at that point I was working 9 hour days with them. I worked on autopilot, talked on autopilot, even drove on autopilot. I wasn’t living, I was just moving from day to day lost in my own sea of pain. I had to take a break and step back from things, so I took an 11 week leave of absence from work and focused on myself and getting healthier. I began to learn to live again, to live with my fibromyalgia instead of being controlled by it.
During those 11 weeks, I did a lot of soul searching. I learned what triggers pain spikes for me and how to avoid some triggers and manage the spikes when they happen. I also learned I wasn’t as isolated as I thought I was. I’d gotten so used to people not understanding what I was going through, that I answered the “How are you?” question one of two ways. With family and close friends, I’d say “I’m hurting,” which is pretty darn vague. No wonder they didn’t know how to empathize with that. With coworkers, acquaintances, or anyone I knew didn’t actually care what my answer was to that question, I’d say “Okay.” During my leave, I started being more honest with those close to me about how much pain I was in, how bad the bad days really are, and what effects fibromyalgia has on my life. Once I started letting people in more, I began to feel less isolated. Even if they can’t empathize exactly with what I’m going through, they try really, really hard. Now instead of answering “Okay” to those outside of my inner circle, I say “I’m hanging in there.” I learned that when I said OK when I was most definitely not okay, that my body reacted to that lie with pain. By being more honest with the people around me, I could at least decrease that one trigger for my pain.
Yes, pain is isolating. Yes, people can’t understand what you’re going through unless they’ve gone through it themselves. But the good people will try to make you feel better if you let them.
Chronic pain and fibromyalgia are isolating in other ways. I can’t make plans with friends and family because I never know how I’ll feel on any given day. I hate to cancel on people last minute, so I don’t make plans. I can’t travel to family reunions or anything like that because traveling makes my pain worse. My family has to come visit me, and even when they’re here I’m not up to a lot. Even on good days when I want to visit with friends or go out and do something fun with my husband, I wear out easily. My energy level is much better now after my 11 week leave, but I still tire easily. I have to budget my day so I have enough energy for work, chores, and fun stuff. I have to leave myself time in between everything to rest. It makes scheduling dinner with friends, date nights with my husband, etc., a nightmare. I’ve learned that I can plan ahead and schedule times to catch up with friends and family if I’m smart about it. If I work that day, I know I’m not up to much that night, maybe a dinner out. If it’s the weekend, I know I’ll be up to something more. If I have work and a doctor’s appointment in a day, I know I’ll be up to nothing else. I also know that if I have to cancel at the last minute, the friends and family I hang out with now won’t hold it against me. Now that they understand what I’m going through, they don’t get annoyed with me. And sometimes, when I’m lucky, the activity we do is so enjoyable that I get lost in it for a while and don’t notice my pain. When the pain returns, it’s not any worse than it was when I started, unlike when I get stressed and unfocused at work.
Fibromyalgia and chronic pain are isolating. But we don’t have to let our pain isolate us from everything in the “outside world.” We just have to be smart about it and prioritize things. Those close to us are worth the effort, and sometimes our efforts are rewarded by a break in our pain.