Home Lifestyle When A Friend Doesn’t Believe In Fibro

When A Friend Doesn’t Believe In Fibro

by InvisiblyMe
A black background with 3D question marks, one of which is read. Overlaid is the title: Your fibro Qs answered - when a friend doesn't believe in fibromyalgia.

Fibromyalgia Questions Answered

Today I’m taking part in the ‘Your Fibro Questions Answered’ project by the Fibro Bloggers Directory. A thank you to Terri for helping me get involved in this after I saw her getting involved, too. I’ve written this post in a bit of a foggy haze with flu & my big grumpy pants on, so I hope it makes some kind of sense. Please note that my answer here is my own opinion and is not medical advice, nor do I in any way wish to tell people what to do; these are merely my thoughts and suggestions from my own perspective. The question I’m answering today is on a friend not believing in fibromyalgia :

“Why does my friend keep telling me that it’s not real and what should I say to her?”

The Difficulty Of Fibromyalgia As An Invisible Illness

Fibromyalgia is a so-called ‘invisible illness’, meaning it can’t be seen and often those with it will look ‘fine’. There’s still a lot of stigma and ignorance around invisible illnesses and disabilities, but with fibromyalgia there’s an added layer of complications. Unlike conditions that can be tested with blood tests and scans and such, fibro can’t.

It’s sometimes referred to as a ‘modern disease’ but its roots go back to 1987 as a cause of illness recognised by the American Medical Association. In 1976, it was referred to as ‘fibromyalgia’ and since then more research has been undertaken and awareness raised over the condition. It still remains an under-researched area of illness, with ignorance still prevalent within the medical profession and socially despite moves towards a greater appreciation for how drastically it can effect the lives of sufferers.

Bloggers, charities and even celebrities, like Lady Gaga, are helping to push for more awareness over what this condition is, that it’s real, and just how hard it can be to live with.

There’s a lot of doubt and scepticism from doctors and specialists who don’t appreciate the depths of fibromyalgia, that’s it’s not simply an umbrella term to classify ‘being a bit tired’ or ‘having a little pain here and there’. It’s no surprise that if even the medical world are slow at catching up that society can be harsh in its compassion towards fibromyalgia. It can’t be seen. It can’t show up on a blood test or an x-ray. For some people, that means it doesn’t exist, even if you and I know that it does. Even if those who deal with fibromyalgia every day know just how real it really is.

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Fighting The Ignorance Around Fibromyalgia

There will always be people who don’t understand. Trying to argue the point can be hard with someone who says it’s not real. I think there are two ways of going about it.

Firstly, you can try to educate your friend a little and tell them that it’s medically recognised as a condition, show him/her some of the literature online from reputable medical sources, tell them how anyone can be affected by fibromyalgia (celebrities included) and that it’s a long term condition that’s hard to diagnose with lots of potential symptoms that can overlap other illnesses. Explain that lack of knowledge is gradually being addressed through more research but that there’s no treatment, it’s sadly a case of learning to manage the symptoms and your life in a way that minimises the impact of the symptoms.

The second route would probably be a little more blunt. Explain that there are many illnesses that cannot be seen but it doesn’t mean they don’t exist. You don’t see the air you breathe, but that doesn’t mean it’s not there. We know our bodies better than anyone else and how we feel; we’re stronger for dealing with something as challenging as fibromyalgia can be, and wouldn’t wish it on our worst enemies. It’s hard enough without having to deal with ignorance, and you don’t need your friend to believe you have whatever you’ve been officially diagnosed with. It’s not their business, and you don’t need the extra stress of caring what others think.

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Please Remember This

Two teddies on the grass with one having its arm around the other.

Nobody can truly, fully understand what someone’s been through unless they’ve experienced it for themselves. I can understand the scepticism over fibromyalgia and whether it’s a ‘real thing’ in its own right. However, this opinion and lack of understanding shouldn’t be used to hurt or embarrass or belittle someone else. It depends on the extent that this person’s opinion affects your relationship.

You are not your illness, whether that’s fibromyalgia or any other illness. It may be possible to keep that part separate from your friendship to a degree. But if what their thoughts negatively impact how they treat you and they say things to make you feel worse, then please remember that you’re worth more than that and you don’t have to put up with that sort of behaviour from anyone, let alone someone who should be a friend. That’s not what friends do.

You could discuss the symptoms you struggle with and how they affect your life. But it’s up to you who you tell about your health conditions, and up to you how much or how little depth you go in to. Don’t feel pressured if you’re not comfortable talking about it.

When it comes to what to do, it depends in the specific set of circumstances. It’s a case of choosing your battles, and spending your limited energy, wisely.

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What would I personally do? I’d suggest they read up on the condition before making an ignorance judgement that can be very hurtful. I’d explain a little, briefly, about fibromyalgia and the invisible illness side of things, to try to help them understand and see a different perspective. If that doesn’t help, I’d also let them know that I don’t need their seal of approval over what medical conditions I’ve been diagnosed with. I know how my body feels and that’s enough validation for me.

Further thoughts :

What It Means To Have An Invisible Illness

Invisible Disabilities Week 2018

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How would you deal with a situation like this? Or have you had to deal with this before?

Caz 

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34 comments

Comedy Plus November 14, 2018 - 5:22 pm

I would think someone would do a bit of research before saying something so silly. There is a lot of information on this illness on the Internet. Goodness.

Have a fabulous day. ♥

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InvisiblyMe November 17, 2018 - 6:43 pm

That’s perfect! Your comment that really takes the ‘zing’ out of people’s ignorance because it’s silly and stupid. Thanks for stopping by – have a relaxing weekend xx

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Christy Istrate November 14, 2018 - 5:33 pm

You are right… “You don’t need their seal of approval.” I think that I would handle it the same way because I have had to in the past. When I worked there were others who did not know what MS was all about and tried to tell me that my symptoms were bogus. I know that I cannot force others to see what I am feeling so I did tell them but backed off when they were being stubborn. I like the way you suggested handling this Caz. Thank you and I hope you are doing well. 🙂

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InvisiblyMe November 17, 2018 - 6:41 pm

I’m sorry you’ve had to experience this kind of situation before too, it’s sad that too many will face such ignorance and lack of compassion where chronic/invisible illness is concerned. I think you handled it well and you’re right, you can’t force people to understand and that is on them. I’m glad you liked the post as I wasn’t too sure of how to approach such a tricky question! Thanks for the great comment, Christy =]
xx

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Anne Fraser November 14, 2018 - 5:54 pm

I think I would question how much I valued their friend ship if they would not believe I had an illness. There is still a lot we don’t know about illnesses like fibro and CFS. The only person who can really know how you feel is yourself.

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InvisiblyMe November 17, 2018 - 6:39 pm

I would like to think a friend would be more compassionate too. And you’re right, there’s so much that’s unknown with these sorts of conditions, but we are each the best judge of how we feel ourselves. Thanks, Anne, have a great weekend! xx

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Christy B November 14, 2018 - 10:27 pm

It’s sad that certain illnesses are still seen as being made up :\ All the more reason for blogs like yours and Terri’s to educate readers xo

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InvisiblyMe November 17, 2018 - 6:38 pm

It is sad, but every little helps with pushing for change and also empowering ourselves, which you do so well yourself, Christy! Have a lovely weekend xx

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Ashleyleia November 14, 2018 - 10:30 pm

People are entitled to their own ignorance, but they certainly shouldn’t be using that ignorance against people with invisible illnesses.

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InvisiblyMe November 17, 2018 - 6:36 pm

It’s the case of accepting that some people won’t understand or will be ignorant, but knowing when to draw the line with someone being insulting or hurtful. Thanks for the comment, Ashley 🙂

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Terri, Reclaiming HOPE November 15, 2018 - 2:19 pm

Another fabulous post Caz! It’s amazing to me that so many people believe we would choose to make up these symptoms, especially when there is so much information about fibromyalgia available. You gave some great suggestions for handling these situations. Of course, we can’t make everyone understand, no matter what facts we present them with, unfortunately. In that case, we just accept that they won’t understand and go from there….. Thanks for addressing such an important question! I pinned this and shared it on my FB page. Hugs!

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InvisiblyMe November 17, 2018 - 6:34 pm

It’s definitely a tricky one because we can only do so much and as you say, you can’t make everyone understand. I’m really glad you liked the post as I wasn’t sure of my responses to this one, it’s not an easy topic to navigate yet it’s an important one as too many of us will face this sort of ignorance/lack of understanding. Thank you so much for sharing and the great comment, Terri! I hope the weekend is kind to you 🙂
xx

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Alyssa November 15, 2018 - 3:25 pm

Absolutely amazing Caz! It is very hurtful when people question our invisible illnesses. I mean we all know how real these illnesses are and we should not ever have to prove ourselves to anyone, especially someone that says they are a friend. Friends should be kind, understanding, helpful and just know who we are. Thank you so much for sharing this very well written and honest post! You my dear are so fantastic!!!

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InvisiblyMe November 17, 2018 - 6:28 pm

I’m so glad you agree, I wasn’t sure if I was being a little harsh. You’ve said this very well, and it can be very hurtful when others question question our illnesses or when they lack any kind of compassion towards what someone else is going through. Thank you, Alyssa. I hope you have a lovely weekend!xx

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Carolyn Page November 15, 2018 - 10:40 pm

Is it possible to tell a friend to ‘go jump’?
Hahaaa… Caz, this is a very serious question you’ve posed. I would like to believe that those with an ‘invisible’ illness would believe more in themselves and not be offended by naysayers. After all, aren’t they just ignorant catalysts to help you to have a greater sense of self? They really ought to be seen in their true light. 🙂

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InvisiblyMe November 17, 2018 - 6:10 pm

Hahaaa, ‘go jump’ is a great response, Carolyn. Your answer to this question beats anything I have written without a doubt! Thank you so much for commenting – I hope others read this and take note! 🙂
xx

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Mrs. Ram's Jams November 16, 2018 - 2:26 am

I think one of the hardest aspects for non-fibro sufferers to understand is that the disease is different for everybody. They don’t get that my fibromyalgia is different from yours and is different from another sufferer’s.

P.S. How come every time I type the word fibromyalgia it pops up with a red underline underneath it? It’s as if the world at large doesn’t recognize that fibromyalgia exists. Coincidence, I think not . . .

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InvisiblyMe November 17, 2018 - 6:00 pm

You’re right, understanding how these things impact everyone so differently is so important. I also think that we need to remember that everyone deals with things differently, just as everyone has a different situation and unique things going on in their life in addition to illness. Made me chuckle about the red underline for fibromyalgia… quite the coincidence indeed! Thanks for the great comment – hope you’re having a lovely weekend =]
xx

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Mishka November 16, 2018 - 6:55 am

Great post, Caz! We face so many hurdles with invisible illnesses. I decided at some point to stop worrying about if other people believe me. I’m not a teacher, nor a doctor. I’m also honest so if someone doesn’t believe me, that’s on them. There’s been so much research with clear findings that at this point if someone doesn’t believe in FM then they are undereducated. Just recently researchers found clear inflammation in the brain because of a new type of test they can now do. My advice: don’t let people dull your sparkle, you don’t have to prove yourself to anyone. ????

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InvisiblyMe November 17, 2018 - 5:58 pm

I think that’s a brilliant approach, Mishka. And you’re absolutely right, you don’t have to prove yourself so don’t let others ‘dull your sparkle’ (what a lovely way to put it)! Thanks for sharing – I hope you have a great weekend xx

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Kirsty November 16, 2018 - 12:57 pm

I hope you’re over the worst of the flu now. I’m sorry that people have to go through this – since when did people become self-appointed medical professionals?It’s like everyone has to have an opinion about things nowadays even though they don’t have any knowledge.
Have a good weekend XX

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InvisiblyMe November 17, 2018 - 5:57 pm

Thanks – flu is on week 5 but I think (hope!) it’s easing up a bit. You’re right with that ‘self-appointed medical professionals’ bit, very well said. Thanks for the great comment, Kirsty – hope you’re doing okay and having a lovely weekend 🙂
xx

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gaillovesgod November 17, 2018 - 10:19 pm

You did just fine in your grumpy pants addressing fibromyalgia..
Praying for you and your friend. Hope you are over the flu soon!
God loves you both!

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InvisiblyMe November 22, 2018 - 4:08 pm

I’m glad you thought so, Gail, thank you so much! I hope the week is going well for you 🙂
xx

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Nikki November 18, 2018 - 6:27 pm

I used to get people like that when I was younger but now more people understand what it is, which is good. Anyway, I nominated you for a versatile blogger award which you can do or not, up to you. But I love your blog. https://lilhamilton.wordpress.com/2018/11/17/the-versatile-blogger-award/

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InvisiblyMe November 28, 2018 - 4:59 pm

I saw that, thank you very much, that’s very kind! 🙂
xx

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Rachel, The Invisible Hypothyroidism November 20, 2018 - 11:25 am

It would certainly make me question how good a friend they really are as I’d like to think a real friend wouldn’t be so ignorant or dismissive!

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InvisiblyMe November 22, 2018 - 4:08 pm

I’d have to agree there!

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Shannon Goins November 21, 2018 - 11:48 pm

As a fibromyalgia sufferer and therapist who works on fibro folks in the Albuquerque area, I know how it feels to be looked at like I am “fine.” I finally just quit telling people unless they tell me they have it, too. And since I work with people with fibro, I do share my story a lot – just not with much of the world outside of the fibro community.

In my case my fibro was triggered by food allergies and cutting out those foods has made a world of difference. I also do Electro-Lymphatic Therapy to keep my lymph moving and Pulsed Electromagnetic Field (PEMF) therapy. I use these as a practitioner and personally.

I would encourage people looking for natural ways to treat their symptoms to check out these therapies with therapists in their geographic areas.

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da-AL November 22, 2018 - 6:35 am

I’d wonder if they’re really a friend or if they’re that stupid. Great post, Caz.

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InvisiblyMe November 22, 2018 - 4:09 pm

Exactly, I’d wonder the same! xx

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Around The World In 18 Years - Andrew February 9, 2019 - 12:46 pm

Great article, well written. I have been going to my GP for many, many years, and finally, just 4 years ago,I received a diagnosis of Fibromyalgia with coeliacs disease and chronic IBS. Now I have osteoporosis and arthritis creeping in. Agony daily, and although some days are good, there are far more days where I can’t leave the house or indeed, get out of bed. Torture. Thankfully though, since my diagnosis, my GP has been amazing, and I do mean amazing, and very supportive. I’m 48 and have gone from running, thai boxing, cycling and being really social, to becoming an old man. Walking is painful, living is painful….let’s just say I’m thankful to the many prescribed drugs that I take, without them I would be bed ridden every day. On the ‘friend’ note, it’s amazing how they have all distanced themselves, I can’t recall the last time any of them lifted a phone, or dropped by the house for a coffee, or to see how I am. Grateful to my patient wife and children, very grateful. x

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Mary (cactus catz) May 6, 2019 - 7:48 pm

it’s a tough one. i wonder if making a business card to hand out with top 5 sites explaining fibro and saying it’s enough of a pain giving all your time to the docs (and to fibro on the days it takes away) that you don’t want to waste time outside their office or when you’re feeling halfway decent explaining it to people all the time. However this gives them an avenue to be educated: they can read about it on their own time and it will help them to understand how serious it is. My friend deals with it a lot and it’s almost like it’s a part-time or full-time job with the amount of time fibro takes — so having to educate someone is almost like going into overtime. I think a caring person would read an article or info if they know where to go and info sites coupled with blogs can give the medical and personal effects of fibro without having to sort through the misinformation that also appears in google searches. A card would help with that. any ways, it’s an idea.

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InvisiblyMe May 7, 2019 - 3:18 pm

That’s an interesting idea, and it would save a lot of energy & upset trying to explain things. It could potentially be useful for medical professionals, friends, family, heck, even strangers who think you don’t deserve a seat on the bus when you’re struggling. I’m sorry your friend deals with it, too. A very good idea… It’s got me thinking! Thank you very much for sharing that, it’s much appreciated  ♥

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