Living with fibromyalgia means pain is a constant.

"Pain is a part of me as much as my eye color or height," explains Denise Schneider-Bargar, a former middle-school science and computer science teacher in Lincoln, Neb., who has had fibromyalgia for 20 years.

For people who don't have fibromyalgia, it's hard to imagine living with debilitating pain every day, and that can lead to misunderstandings and hurtful comments.

Before you put your foot in your mouth and say something insensitive, whether or not it was your intention, consider how your words will be received and try a more positive approach.

Fibromyalgia: What Not to Say

Family members, friends, and even doctors have all been known to make insensitive comments about fibromyalgia. If you find yourself about to voice one of these comments, think about your loved one's feelings first.

  • "Fibromyalgia isn't a real illness." Actually, cases of fibromyalgia have been skyrocketing over the last 10 to 20 years, and it's been recognized by respected institutions such as the Centers for Disease Control and Prevention. Fibromyalgia can be difficult to diagnose, however, which often means healthcare plans don't cover treatments and doctors are sometimes too quick to write off fibromyalgia pain as something else. The last thing a friend or family member needs to hear is your doubt about whether or not she's truly experiencing it.
  • "You don't look sick." People who have fibromyalgia are frequently made to feel as if they're crazy or that the pain is all in their head. Living with fibromyalgia means feeling as if you have the flu, with symptoms like body aches, forgetfulness, insomnia, and fatigue.

    Schneider-Bargar has heard this comment multiple times since she was diagnosed. "I hurt all the time," she says, "but my attitude is better if I try to look presentable."

  • "You just need more rest." Resting helps, but sometimes people with fibromyalgia pain can't get enough rest to feel like their old self.
  • "I'm sure you can do this." People who have fibromyalgia need to slowly increase their activity and trust their body about when it's time to rest. When they don't, they'll wake up the next day feeling as if they were hit by a truck.

    Trust that they know what their bodies can handle. "I have to manage my life to limit the impact my pain has on my activities and attitude," Schneider-Bargar says.

  • "I'm sure you can't do this." Just as you shouldn't assume people with fibromyalgia can do a certain activity, don't assume they can't. Extend the invitation and let them decide.

    When friends don't invite Schneider-Bargar to events because of her fibromyalgia pain, it's hurtful. "Yes, I might have hurt too much, but please let me decide what I can and can't do," she says. "This event might have been just the distraction I need to help cope with my pain."

Fibromyalgia: What You Should Say

Fibromyalgia support can be as simple as voicing these positive statements:

  • "If you can join me, I'd love to see you." People who have fibromyalgia often don't know until the day of an event if they can participate in a specific activity, but it's always nice to get an invitation with the understanding that it may be declined.

    Doing activities helps them divert attention from their pain. "It also really helps me feel ‘normal' to be asked," Schneider-Bargar says.

  • "I understand." Although you may not know what it feels like to have fibromyalgia, telling a friend or family member that you understand when she can't participate in activities because of pain is the best way to show support.

    "On good days, I can do anything I want," Schneider-Bargar says. "On other days, I can't get out of bed. Unfortunately I can't predict how I'll feel ahead of time."

  • "You can ask me for help." It's important for people with fibromyalgia to know they can ask for help when they need it.

Fibromyalgia support takes positive encouragement and understanding — just a few kind words can help your loved one cope with the pain.