Living with fibromyalgia means pain is a constant. Pain is a part of me as much as my eye color or height. 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. The Internet has been flooded recently with blog posts about “What not to say to someone with chronic pain, fibromyalgia, etc. You’ve probably seen a few show up in your news feeds in fact, we’ve shared a few of them ourselves.
They can absolutely be helpful to friends and family members looking for some “fibromyalgia etiquette” or advice on things they may say that could inadvertently hurt their loved ones with fibromyalgia. Seeing all these wonderful blog posts got us to thinking what about the things you SHOULD say?
Now that they’re well versed on what not to say, it may be helpful to know which things we may want them to say. Here are some ways to support fibromyalgia sufferers and some things you should say to fibromyalgia victims.
I can’t imagine having that much pain everyday
You might be tempted to talk about a time you experienced some pain in an effort to relate or empathize with their pain. But unless your pain was severe and chronic (lasted more than 3 months) don’t do this! Don’t get me wrong we understand and appreciate that you’re trying to empathize and its coming from a place of love. However, it can be frustrating to have someone who hasn’t experienced what they have, comparing their temporary/fleeting pain to their daily struggle with widespread pain.
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A lot times these comparisons emphasize them that others don’t understand their pain and leave them feeling more irritated or lonely. Imagine trying to comfort a young U.S. Marine struggling to make it through the physically punishing “hell week” at boot camp by telling him or her that you once did a 1-week Zumba boot camp at the local gym. Obviously, the Marine would find little ease in this and might take exemption to the comparison.
So if you haven’t experienced pain or discomfort on the same level as fibromyalgia simply tell them that you couldn’t imagine having that much pain every day. This statement has more power than you might think. They don’t necessarily need you to understand what it’s like (though some days they may wish you could feel it for just a moment so you understood) but knowing that you recognize the pain and uneasiness is of extreme comfort.
Be their advocate
While they don’t expect anyone to have to do their bidding for them, it can be exhausting to have to explain and/or defend themselves to those who don’t understand fibromyalgia. Dealing with insensitive or skeptical doctors and medical professionals can also be tremendously annoying.
Having an advocate who can stand up and offer a voice of support can make a real difference. Whether it be standing up for them when they’re not around or standing next to them when facing an unsympathetic or doubtful audience, knowing someone believes them and has their back can help bring some much needed peace of mind.
I am here if you ever need to talk
Everyone has bad days, in spite of if they have a chronic illness or not. We all need a confidant or someone to vent to. For those of people with fibromyalgia – this is even truer. If you feel comfortable making yourself available to lend an ear – let them know.
Knowing that there’s someone agreeable to listen even if they don’t fully understand what it’s like to live with fibromyalgia can be a lifesaver. They don’t need you to answer or fix their problems, but simply listen and console when necessary.
Communication is a key in any healthy relationship. While it isn’t easy, open communication is a must. This means each person needs to feel safe to voice his or her opinions, concerns and thoughts without fear of them being attacked.
Whereas it won’t solve every trouble, clear and open communication can avoid many problems from festering and becoming worse. When life is broken up by an invisible illness like fibromyalgia, there are no simple answers to the many troubles both those suffering and their loved ones will face.
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Whereas the suggestions above only scratch the surface and are by no means planned to fix every difficulty that arises as you look for support of a friend or loved one with fibromyalgia, they can at least give you some insight into what he or she may want from you the most. Ultimately, someone who both believes us and remains by our side is the best kind of support they could wish for.
What is the best thing I can do to help you?
The beauty of this question is that it is open-ended, so it is up to each individual to decide what the best support you could give them is. Even though those of people with fibromyalgia have a lot in common and can narrate on many levels they’re still exclusive individuals with unstable opinions and situations.
What may help one person may be of little help to another. Let the person in need of help decide what the best way for you to support them is. If you think they are shy to ask for your aid even though you’ve offered, push them a bit. But if they continue to be doubtful, simply tell them it’s a standing offer and remind them as suitable. If you’ll let them know you’re there for them, the rest will usually take care of itself.
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