Your Fibro Qs Answered : When A Friend Doesn’t Believe In Fibro

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 :

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

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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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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Remember – 

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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31 Comments

  1. 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. ♥

    • 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

  2. 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. 🙂

    • 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

  3. 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.

    • 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

  4. 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

    • 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

  5. 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.

    • 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 🙂

  6. 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!

    • 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

  7. 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!!!

    • 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

  8. 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. 🙂

    • 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

  9. 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 . . .

    • 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

  10. 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. 🌸

    • 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

  11. 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

    • 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

  12. 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!

    • 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

    • November 28, 2018 / 4:59 pm

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

  13. 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!

    • November 22, 2018 / 4:08 pm

      I’d have to agree there!

  14. 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.

  15. November 22, 2018 / 6:35 am

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

    • November 22, 2018 / 4:09 pm

      Exactly, I’d wonder the same! xx

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