As everyone knows living with fibro everyday is a minefield of many different symptoms with the majority of people not knowing from one day to another how they are going to feel and I for one feel guilty that I can't manage to do 'normal' things. This week however with laryngitis and a chest infection I feel I can tell people I'm not well, yet usually if someone asks me how I am I always say 'i'm ok' even though i'm most definitely not. Is it just me or does the attitude of people towards fibromyalgia make you feel you have to hide it which in turn makes us feel guilty?? xx

7 Replies

  • I think maybe in the past we were told its in our minds it's not real, but since discovered that it is a really debilitating illness, also there's nothing to show where as something like laryngitis can be heard if not seen, I always say I'm ok thanx or not bad thanx, but really I'm in a really bad way, come on here very day like I do and you will get a laugh with the banter that goes on between grumpy, gins and ladymoth, I smile every time I read it, mind u haven't got my head round the site yet I'm not sure how to go back to one particular conversation once I leave it to read something else lol, you take care hope u have a reasonably good day gentle hugs to you xx

  • I always say "I'm fine" how ever I feel and people that really know me know what it means!!

    Hope your day is good xguns

  • I have severe (RA) rheumathoid arthritis which is a more "recognised" disease than fibro. I do undestand what you are saying - it is impossible to many to "see" pain or have the ability to empathise with chronic ongoing pain. I am often told "you don't look ill" or, "you will feel better now it's warming up" - RA isn't affected by weather like osteoarthritis - I am in as much pain in summer as I am in winter! When you are croaky with a sore throat or visibly coughing with a chest infection people can empathise - most people have had sore throats etc, but as I said you cannot "see" or "hear" muscles that are screaming in pain. It isn't fair I know, but at least sites like this allow you let off steam and we DO empathise and understand. x

  • It is tricky I managed my fibro well for seven years so there was no need to tell anyone I had it then I crashed and burnt and never got totally well again so I gave up work and then arthritis promptly came for a visit and never left so in my 40s I,m a bit of a wreck , use a mobilty scooter and tap on my iPad with two fingers as my thumbs don't work well so people can see I have arthritis and make allowances so yes I feel guilty too as no one ever asks what is wrong with me they can see.. But if anyone asks what I do at home in the day I say I have fibro and I volunteer on a fibro forum..

    Hope you get over your chest infection and laryngitis soon

    Vg x

  • Hello Kiera2002,

    You may be interested to read this passage from an article called The Ripple Effects of Fibromyalgia: Who is impacted and how?

    By Rosalie Devonshire MSW, LCSW, Author Taking Charge of Fibromyalgia

    'Emotional Rescue

    If you had been a healthy, active person and develop fibromyalgia, the symptoms can create havoc in your life. Your inability to engage in activities you once enjoyed can cause you to become frustrated, angry, worried, or depressed. Your inability to meet the needs of your children, spouse, job, or community may contribute to a sense of inadequacy and worthlessness. Your friends may start to distance themselves. You may lose your job or marriage, causing serious financial distress and emotional pain. These are all normal reactions to the losses you suffer when fibromyalgia strikes. You are not alone, however.

    Many people with other illnesses such as rheumatoid arthritis, heart disease, cancer, diabetes or other chronic illnesses have the same reactions. Unfortunately, because fibro patients have no obvious physical or lab abnormalities, many have been told by their friends, family, or even their doctors that there is nothing wrong with them and their symptoms are all in their heads. “Just get the stress out of your life,” they say, “and you will be fine.” These people are wrong. Fibromyalgia is a real illness and its psychological impact should not be dismissed'

    If you would like to read the rest of the article above, please google it or you can private message me for the link

    Interesting point you raise that because people can't see our illness I personally went through the feelings of needing to explain to people, but you sometimes see that look in their eye like they are thinking ' you don't look that ill' !

    Fairly recently I blogged a letter someone had written to explain Fibro and many members seemed to think they would personally use it in their everyday life to explain to others about Fibro

    Here is the link to that thread, which may be of interest


    Hope this helps

    Emma :)

  • I have never felt the need to explain to anyone.

    My illness is my business, and if others don't choose to acknowledge it, that's not a problem for me.

    I realise that you have to be a curmudgeonly old biddy like me to develop this attitude, but do try it - it works wonders for your self-esteem!

    Moffy x

  • Thank you everyone

    Rachel xx

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