6 Things You Can (AND SHOULD) Say to Someone with Fibromyalgia
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. Of course, not everyone with chronic pain like fibromyalgia is the same – but we tried to create a list of six things we thought most with fibromyalgia would want to hear from friends or loved ones.
If you suffer from fibromyalgia or another chronic illness – share this list with your friends and use it as a conversation starter to help them understand how your fibromyalgia affects you.
If you don’t suffer from a chronic illness but are looking for ways to support a friend or loved one who does – try discussing these ideas with them and use it as an ice breaker to allow them to tell you what kind of support might be best for them. You might think they don’t want to talk to you about it – but more often than not we like to be open about it but stay silent out of a fear of sounding overbearing or burdening you with our problems.
With that said, lets take a look at these 6 things you can (and probably should) say to someone with fibromyalgia:
#1 – Tell me about fibromyalgia…
Sounds simple, right? It is. But believe it or not – most of us would jump out of our skin if a friend or loved one asked us this. Why? For starters, we often feel ostracized for our condition because the symptoms are largely invisible. There is a constant worry that others won’t believe that our symptoms are real. This fear of being ostracized or having others doubt us can make us become guarded or fearful of discussing it.
Hearing this question (if asked genuinely) is reassuring. It shows that you’re genuinely interested in understanding it. Most of the time, we’re willing to talk about our condition – but don’t want to overburden anyone. This question can break down barriers and allow us to feel comfortable sharing facts about fibromyalgia and how it has affected our lives.
The only caveat here is that you be open-minded and fair when listening to our answer. We may not always be able to explain things perfectly and you may have lingering questions or doubts – but as long as there is a genuine interest in understanding and mutually respectful discussion you might not be able to shut us up!
#2 – Tell me about how fibromyalgia has affected you personally – and the impact it has had on your day-to-day life.
This is a good piggyback question to the first. More than understanding what fibromyalgia is – we want people to know HOW it affects our daily lives. Giving us the opportunity to tell you about it can help us get it off our chests and can give you a better idea of the real life implications of a chronic illness. Use these first two questions as a way to break the ice and open up a productive dialogue about fibromyalgia.
#3 – 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 our 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 we have compare their temporary/fleeting pain to our daily struggle with widespread pain.
Often times these comparisons reinforce to us that others don’t understand our pain and leave us feeling more frustrated or isolated. 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. Naturally, the Marine would find little comfort in this and might take exception to the comparison.
So if you haven’t experienced pain or discomfort on the same level as fibromyalgia – simply tell us that you couldn’t imagine having that much pain everyday. This statement has more power than you might think. We don’t necessarily need you to understand what it’s like (though some days we may wish you could feel it for just a moment so you understood) – but knowing that you understand the pain and discomfort are extreme is comforting in and of itself.
#4 – I’m here if you ever need to talk
Everyone has bad days, regardless of if they have a chronic illness or not. We all need a confidant or someone to vent to. For those of us with fibromyalgia – this is even more true. If you feel comfortable making yourself available to lend an ear – let us know. Knowing that there’s someone willing to listen – even if they don’t fully comprehend what it’s like to live with fibromyalgia – can be a lifesaver. We don’t need you to answer or fix our problems, but simply listen and console when necessary.
#5 – It’s okay if you can’t…
…go out tonight, meet me for a coffee today, etc. Besides the pain and physical discomfort of fibromyalgia, one of the things that can torture us emotionally is the guilt of not being able to live the life we once did – especially when it comes to our social life. There will be days when plans will change – when we can’t do something we fully intended to do.
If we cancel or decline an invite with you, please know that it’s nothing personal and that it’s not because we’re lazy, uninterested, etc. We are often racked with guilt when these occasions arise – so knowing that you understand why we can’t make it and hearing the words “it’s okay” can help quell some of the guilt and emotional turmoil we feel.
#6 – What is the best thing I can do to help or support 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 us with fibromyalgia have a lot in common and can relate on many levels – we’re still unique individuals with varying 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 hesitant to ask for your help even though you’ve offered, press them a bit. But if they continue to be hesitant, simply tell them it’s a standing offer and remind them as appropriate.
So there you have it – a few simple suggestions on what you SHOULD say to your friend or family member with fibromyalgia. Above all – remember to be open, communicate often and be aware of/sensitive to their situation. If you’ll let them know you’re there for them, the rest will usually take care of itself.