Revealed: How Friends & Family Can Help Loved Ones Living with Fibromyalgia

Table of contents

Revealed: How Friends & Family Can Help Loved Ones Living with Fibromyalgia

It’s not surprising that some fibromyalgia patients have trouble discussing their condition with friends, family and colleagues. The reasons are many, varied and understandable. Fibromyalgia Australia tells us there are one million Australians with the disorder, and yet many people have never heard of the illness. (Scientists working in the field report sufferers make up 1-4% of the world population. With likely poor diagnosis in many countries, the incidence in Australia is expected to be about the norm.)

There are also people who harbor wrong notions about the illness, based upon antiquated information. Proper education is vital, and every sufferer has a vested interest in ensuring the correct information is widely known.

If your family, friends and close associates, even your employers, don’t understand the illness and the symptoms, they will be unable to offer support when you need it. And what if you have met someone new who matters very much, and you need to have that conversation! Don’t be surprised if people respond differently to the news. While they might not show it, your loved ones may take it really hard, with their concern for you causing them to feel quite upset, whereas an employer’s first reaction might seem cold and mostly surround productivity concerns. A potential partner may wonder about your quality of life and how that might affect your future together.

Before having your workplace talk, do make sure you feel protected. Every person has the right to work in a safe, discrimination-free workplace in Australia. If you believe disclosure of your illness will result in prejudice or unfairness, then it would be wise to seek mentoring from a colleague you trust or from a workplace counsellor.

Please do stress to everyone that fibromyalgia is a functional disorder, recognized by the World Health Organization as far back as 1994, and included in the International Classification of Diseases under diseases of the musculoskeletal system and connective tissue.

You don’t have to share every detail of your symptoms if you think that might be counterproductive. Instead of specifically talking about pain, you might instead say that it is sometimes easier for you when you are sitting than standing. You might also want to add that while fibromyalgia isn’t fun, you are pro-active and do as much as you can to adapt to symptoms as they arise.

Everyone will want reassurance that fibromyalgia is not fatal, does not shorten life, and is not contagious.

With those big-ticket items out of the way, you should then talk about how it impacts you. Some will want to know how you got the condition, whether it can be passed on through genetics, and how it affects your daily life.  

Symptoms, quality of life, and flares are the critical areas you should discuss with openness and honesty whenever possible. Most people’s response will include saying how well you always look. You can tell them that fibromyalgia is mostly invisible, but they may have noticed some days you seem perhaps a little slower or more tired and those days are more than likely when you have a flare of symptoms.

Don’t downplay how it feels to have a flare, and how you feel after a string of nights with poor sleep. Tell them how you sometimes need to take a little more rest, and how even too much noise can stimulate pain. Stress can be the elephant in the room … seen, felt, but rarely discussed, and yet we know that stress is the major factor in the exacerbation of symptoms for most fibro sufferers. A chat about what stresses you at home, at work, and in your relationships should be close to the top of the discussion list.

Your employer might be open to considering more flexible hours, or perhaps won’t mind if you listen to music through headphones while you work. Every positive tweak to our work and home environment can help dial down the stress. It’s often the case that if we alleviate our own stress and stressors, then we also decrease stress for others. If the people you interact with are made aware of your flare days, then they can support you. If they don’t know, they can’t help. Support works both ways of course. There may be some way you can balance the scales with a thank-you gesture. If you are less stressed, and they feel appreciated, everyone benefits.

Those you share with can become a part of the team of people who understand and support you. If they would like to know more about fibromyalgia, why not email them a link to the MoreGoodDays® website where they will get accurate information and a broad understanding of what it’s like to have the condition.

Revealed: How Friends & Family Can Help Loved Ones Living with Fibromyalgia

Table of contents

Revealed: How Friends & Family Can Help Loved Ones Living with Fibromyalgia

It’s not surprising that some fibromyalgia patients have trouble discussing their condition with friends, family and colleagues. The reasons are many, varied and understandable. Fibromyalgia Australia tells us there are one million Australians with the disorder, and yet many people have never heard of the illness. (Scientists working in the field report sufferers make up 1-4% of the world population. With likely poor diagnosis in many countries, the incidence in Australia is expected to be about the norm.)

There are also people who harbor wrong notions about the illness, based upon antiquated information. Proper education is vital, and every sufferer has a vested interest in ensuring the correct information is widely known.

If your family, friends and close associates, even your employers, don’t understand the illness and the symptoms, they will be unable to offer support when you need it. And what if you have met someone new who matters very much, and you need to have that conversation! Don’t be surprised if people respond differently to the news. While they might not show it, your loved ones may take it really hard, with their concern for you causing them to feel quite upset, whereas an employer’s first reaction might seem cold and mostly surround productivity concerns. A potential partner may wonder about your quality of life and how that might affect your future together.

Before having your workplace talk, do make sure you feel protected. Every person has the right to work in a safe, discrimination-free workplace in Australia. If you believe disclosure of your illness will result in prejudice or unfairness, then it would be wise to seek mentoring from a colleague you trust or from a workplace counsellor.

Please do stress to everyone that fibromyalgia is a functional disorder, recognized by the World Health Organization as far back as 1994, and included in the International Classification of Diseases under diseases of the musculoskeletal system and connective tissue.

You don’t have to share every detail of your symptoms if you think that might be counterproductive. Instead of specifically talking about pain, you might instead say that it is sometimes easier for you when you are sitting than standing. You might also want to add that while fibromyalgia isn’t fun, you are pro-active and do as much as you can to adapt to symptoms as they arise.

Everyone will want reassurance that fibromyalgia is not fatal, does not shorten life, and is not contagious.

With those big-ticket items out of the way, you should then talk about how it impacts you. Some will want to know how you got the condition, whether it can be passed on through genetics, and how it affects your daily life.  

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Symptoms, quality of life, and flares are the critical areas you should discuss with openness and honesty whenever possible. Most people’s response will include saying how well you always look. You can tell them that fibromyalgia is mostly invisible, but they may have noticed some days you seem perhaps a little slower or more tired and those days are more than likely when you have a flare of symptoms.

Don’t downplay how it feels to have a flare, and how you feel after a string of nights with poor sleep. Tell them how you sometimes need to take a little more rest, and how even too much noise can stimulate pain. Stress can be the elephant in the room … seen, felt, but rarely discussed, and yet we know that stress is the major factor in the exacerbation of symptoms for most fibro sufferers. A chat about what stresses you at home, at work, and in your relationships should be close to the top of the discussion list.

Your employer might be open to considering more flexible hours, or perhaps won’t mind if you listen to music through headphones while you work. Every positive tweak to our work and home environment can help dial down the stress. It’s often the case that if we alleviate our own stress and stressors, then we also decrease stress for others. If the people you interact with are made aware of your flare days, then they can support you. If they don’t know, they can’t help. Support works both ways of course. There may be some way you can balance the scales with a thank-you gesture. If you are less stressed, and they feel appreciated, everyone benefits.

Those you share with can become a part of the team of people who understand and support you. If they would like to know more about fibromyalgia, why not email them a link to the MoreGoodDays® website where they will get accurate information and a broad understanding of what it’s like to have the condition.