Do you have a friend or loved one who suffers from an invisible illness like fibromyalgia? These invisible illnesses can wreak havoc on the lives of those that suffer from them – as well as on their relationships with family, friends, co-workers and more. Now more than ever, they need the support of loved ones as they face the difficult road ahead. Knowing the best way to support someone you love as they cope with a chronic illness like fibromyalgia can be challenging, especially if this is your first exposure to the condition.
We recently asked over 130k fibromyalgia sufferers what they wish others understood about their lives with fibromyalgia – and what advice they would give to family and friends who have a sincere desire to help. The response was overwhelming, with thousands of comments pouring in. After sifting through the responses, we’ve compiled a list of seven things actual fibromyalgia sufferers want you to understand and the best ways you can support them.
#1 – The pain is real…we do not exaggerate the extent of what fibromyalgia does to our bodies!
One of the myths about fibromyalgia is that it isn’t real – or that the symptoms are “all in our heads”. Part of the problem was that until October of this year, there was no official diagnosis for fibromyalgia in the medical coding list used by doctors, medical professionals and insurance providers. Without an official diagnosis, it’s clear to see how some could use that as a justification to dismiss the condition as made up. Fortunately, a recent change in the list added fibromyalgia as an official diagnosis.
Another factor contributing to the misconception that the symptoms are “all in our head” is that fibromyalgia is an invisible illness. In other words, there are no obvious outwards signs of the widespread pain or other symptoms. Other than perhaps looking fatigued, we may bear no obvious signs of suffering. Though the symptoms may be invisible, the pain is very real. We usually do our best to act as if we’re fine, but the pain we’re feeling is intense, widespread and often times unbearable.
Acknowledging our suffering and believing us may not cure the pain, but it provides an emotional and mental comfort to us. It helps to know that those close to us don’t think we’re crazy or making things up.
#2 – Our pain may fluctuate – some days will be worse than others
Something that can be frustrating for those of us with fibromyalgia as well as those around us is the fluctuation in pain. We may have a good day one day, then be completely knocked off our feet the next. This fluctuation in pain can even happen in the span of a few minutes or hours – leaving it difficult to explain that although we were fine yesterday or a few hours ago, we’re in a lot of pain now. This can be especially challenging if we’re forced to cancel plans because of it. Just know that our pain may fluctuate and please believe us when we’re fine one minute but struggling the next.
#3 – Be our advocate
While we don’t expect anyone to have to do our bidding for us, it can be exhausting to have to explain and/or defend ourselves to those who don’t understand fibromyalgia. Dealing with unsympathetic or skeptical doctors and medical professionals can also be extremely frustrating. Having an advocate who can stand up and offer a voice of support can make a real difference. Whether it be standing up for us when we’re not around or standing next to us when facing an unsympathetic or doubtful audience – knowing someone believes us and has our back can help bring some much needed peace of mind.
#4 – Don’t say, “It could be worse…”
Something we hear a lot is that “it could be worse, you could have <insert other terrible illness here>”. We know you’re only trying to help and yes, we know that it could always be worse – but hearing this does not help. For one, it may add to the guilt we’re already feeling for being sick. We interpret it as “it could be worse, so you shouldn’t be complaining”. You wouldn’t tell someone recovering from a serious car accident that “it could be worse” would you? That wouldn’t help. Instead, you would feel compassion and offer them your love and support as they recovered.
#5 – We appreciate understanding and compassion – but don’t need pity
Everyone likes a good pity party once in a while – but what we really want (and need) more than pity is understanding, sincere compassion and positive support. These will lift our spirits and encourage us in our battle with fibromyalgia more than having others feel sorry for us.
#6 – If I’m grumpy don’t take it personal… I’m just trying to make it through the day
First off, we want to say thanks for putting up with us when we are grumpy! We know that sometimes, because of our fibromyalgia, we may not be the most pleasant to be around. Please understand that if we are grumpy, irritated, tired, short-tempered, etc. it’s not directed at you. We’re simply frustrated with the pain or even frustrated at ourselves – unfortunately this frustration sometimes manifests itself in ways that can seem directed at those we love.
#7 – Communicate, communicate, and communicate!
This last one is as much a tip for us as it is for friends and loved ones. Communication is key in any healthy relationship. Unfortunately, chronic illnesses can often lead to breakdowns in communication as both parties feel frustrated, misunderstood, etc. 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. While it won’t solve every problem, clear and open communication can prevent many problems from festering and becoming worse.
When life is interrupted by an invisible illness like fibromyalgia, there are no easy answers to the many problems both those suffering and their loved ones will face. While the suggestions above only scratch the surface and are by no means intended to fix every problem that arises as you seek to support a friend or loved one with fibromyalgia, they can at least give you some insight into what he or she may need from you the most. Ultimately, someone who both believes us and remains by our side is the best kind of support we could wish for.