People living with fibromyalgia, a chronic pain condition, are often misunderstood for a variety of reasons. As a person living with fibromyalgia and working with fibromyalgia clients I’ve amassed a list of 9 things that people living with fibromyalgia want you to know.
- They aren’t hypochondriacs. The pain and fatigue and everything else is real. Fibromyalgia is considered an “invisible illness” because physically they don’t look sick. People with fibromyalgia spend a lot of time masking their illness because they are afraid that they will be judged by others who will equate them with hypochondriacs. They are not and their issues are very real.
- When they say that they are in pain, they are in more pain than you can imagine. You see, people with fibromyalgia are always feeling pain and they just deal with it. That’s their life. But when they are in enough pain where you can see that they are in discomfort then they are feeling so much pain that they need to take a time out. They need to shut down for a few days and just breathe through it.
- When you see someone with fibromyalgia that you’ve known for a long time and they are no longer that happy, smiling, sociable person that you once knew don’t just assume that they are depressed or angry with you. It takes a lot of effort to socialize and get through a family dinner or be surrounded by loud party goers. The amount of energy that is expelled dealing with getting through the night even though it feels like someone is hitting you with a sledge hammer or stabbing you in the shoulder is a bit much. We want to be carefree and happy, and all hope and pray that someday we will be able to be that person again.
- If they decline an invitation or have to cancel a meet up then don’t try to push them to go. They already feel bad enough that they don’t feel up to it and you making them feel even worse by pushing the issue is only going to make them feel worse. People with fibromyalgia don’t enjoy being anti-social, actually the majority of people with fibromyalgia were quite social beings before their affliction. You having an issue with them not making an event only makes them mourn the loss of that social part of their personality all the more.
- Don’t tell them that they’d feel better if they exercise more. Don’t drag them to the gym or guilt them into going to crossfit with you. People with fibromyalgia know their limits and some days it takes every ounce of energy that they have to get out of bed, take a shower, drive into work, spend 8-9 hours being productive and trying to not let the whole office know how much pain you are in or how foggy your brain is, and then driving home without falling asleep. For a regular person that’s just a typical day. For someone with fibromyalgia that is exhausting and scary. If they feel up to taking a walk or going to a restorative yoga class then praise them. Don’t insinuate that it isn’t enough.
- They don’t invite you to their house because they don’t have the energy or stamina to clean it, not because they don’t miss you. The embarrassment of not being able to clean the house is overwhelming and if they do invite you and try to clean the house to their standards it exhausts them and throws them into so much pain that they can’t enjoy your visit. They don’t like to live in a cluttered or messy home, they just have no choice some times.
- When you ask them how they’re doing 9 out of 10 times they’ll just say “I’m ok” or “it’s not a great day” and leave it at that. If someone with fibromyalgia actually took the time to tell you how they’re feeling you would be zoning out within the first minute. Just know that they appreciate you asking and caring about how they are doing, however, unless they say “i’m actually feeling pretty good today” in a surprised tone then they really are not in a good place.
- They don’t mean to be negative nellies. Sometimes when you’re not feeling well for so long it’s hard to keep your spirits up. Even though we don’t reach out to you and let you know that we need your friendship, we do. Sometimes it just takes more strength than we’ve got to pick up the phone and call someone.
- If you see someone with fibromyalgia and want to give them a hug then be very gentle. Sadly, hugs often hurt but if you do a nice slow gentle hug then that’s perfect. We all want a nice tight bear hug once in a while but someone with fibromyalgia will secretly wince after rather than feel the love that was behind the hug.