Lack of Understanding: Hi, I'm new here... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Lack of Understanding

cuddlyka profile image

Hi, I'm new here and was wondering if anyone has any advice on how to deal with family members that say impatiently "whats wrong now"? when you tell them that you are feeling ill again?

19 Replies

You need to get them some fmuk leaflets and sit them all down and tell them all what's going on. Tell them it's a chronic long term illness. What your symptoms are and any potential ones. Then talk about the lack of substantial treatment options available. Tell them how you're feeling. They're just not understanding your situation.....mine were like that, my mum and dad understand, my sis just thinks I'm lazy lol

Good luck with this one. Im about to visit family who dont have a clue how I feel. Let me know how you get on with an answer.


When people say that too me I just say'how long have you got'☺ its hard an upsetting and annoying but you just can't educate some I try too just let it go over my can't change I try an change how they effect me with there comments sod them I say ☺x

Thank you all for your replies, its is so good to hear from people who understand. I was initially diagnosed around 20+ years ago with haitus hernia/ibs/depression and felt like I was annoying enough when any of these things were in full swing! For the past 5+ years I have gone from having what I thought was just regular flu like illnesses with headaches/tinnitus/sore head and face/pain in neck/shoulders/upper back and over the the last year pain in lower back/groin area which feels a little like being in labour to constantly feeling this way with very few good days. At this point I had to give up work. After 3 years of not visiting the doctor because my bloods were always okay, on Tuesday morning daughter took me to the doctors after I woke up with blurry vision, dreadful tinnitus and hearing what appeared to be my heart stopping it is only now that they are telling me that I could be suffering with Fibromyalgia. Yet more bloods have been done and I am to see the doctor again on Monday. Can anyone advise me where to go from here? I don't have an official diagnosis but may need to get one going forward with regards to benefits and help with managing it.

Most people get diagnosed by a neurologist or a rheumatologist,you can ask your doc too refer you,but sounds like he might do that anyway to get an official diognosis,but even when you have a diagnosis most people get sent back too there gp too' manage' the condition,but your gp can refer you too the pain clinic an he should do this.there's a few things they can offer you,pysio,hydro therapy, all sorts.ur go needs too help you with some sort of pain relief too x

Thank you Lorsxxxx Yes, I'm already taking co codamol to help me get to sleep and then back to sleep when I wake in the night. I will talk to my doctor on Monday about a referral and take it from there. I'm just so relieved after all of these years to know what I am potentially dealing with and after finding this site realizing I am not just some nut job who is imagining it all! xx

in reply to cuddlyka

Yes although finding out you have fibro isent great,getting a diagnosis is a relief I know,I hope you have a good supportive Gp that helps.this sites great you can get lots if advice help and we have a giggle too hope all go's well for you☺xx

I'd definitely go with the leaflets, or a print out. And if they ask you a second time, they get a second leaflet.

Friend phoned a few days ago and asked how I was ( as you do when you open a conversation type of question) I said I was in awful pain that day. "What's caused that ?" She said. Hmmmm, let me think............

cuddlyka profile image
cuddlyka in reply to

Hi, I think this is good advice and will print out some information on this condition to give it to family members. I think that I got so upset today because it was my daughter (she's 30) who asked the question after being the one to take me to the doctor's on Tuesday morning and she is the one that has been telling to go back to the doctor's for the past year! Personally, I think she is just worried about loosing her childcare (me) and doesn't yet appreciate what the future may have in store for me. My mum said that she had heard of it but that all I needed to do was loose some weight and do more exercise and I will feel much better..if only it was that easy.

I have to love my family from a distance!

I agree with Silmarillion. And, after you have given them info on Fibro, give them time to research more themselves in order to try and understand it all. Unfortunately there will be people that dismiss all the facts and just say you're lazy or it's all in your head. If they are family, it's hard. My ex is one of those people and he always has a snide remark ready when he picks up his daughter. I don't let it get to me, I just ignore it and carry on. I know it can be hard sometimes, beleive me, but you know its fact and therefore you have the upper hand. Think positive, be positive and know you will always have people that will support you xx

Some one asked me to describe what having Fibro feels like once:

Well, it's like having a sever migraine all over the body and you have a tight compression bandage on top of it, just so it throbs a bit more. Then your mind feels like you've just woken up from having anaesthetic and you have problems trying to find the words to talk. The fatigues like what you feel like when you've been out partying all night just there's no fond memories to make up for it. Say it feels like your wearing one of those old fashioned diving suits when you do your daily tasks. If all that fails to educated them just say " you ever had a really, really bad hang over?" they'll probably say yes, " well times that by 10 and that's probably how I feel on a good day. People only understand when they have a point of reference to go by. I have given up telling people. I have learnt to say no and put myself first, I don't beat myself up if I can't manage to do something and I have become really really good at self care, pacing myself and taking pleasure in what I can. I don't have to prove I'm ill to anyone I know my own self. A lot of people's self worth is tied up in helping, caring, looking after other people I just do that for myself now and I don't feel guilty that I can no longer do it for others. If people don't recognise I'm ill so be it. I'm in bed, with the sun shining through the window thinking life's good, I don't have to get up to go to work tomorrow! Positive mental attitude and a scr** them attitude help you get through the pain of Fibro.

Tullyanne profile image
Tullyanne in reply to Aishah50

I liked your post, I’m off work, really not fit to do it and I’m so grateful and relieved to not have to struggle on with it. I too lie in my bed and appreciate it, but I still haven’t gotten rid of the guilt, I push myself to do stuff, to function and mostly this makes me feel that I’ve accomplished daily life - which is good, but I feel so physically wrecked that it’s a blessing to get back to bed.

Are mornings worse for you? This everlasting hangover, is love to just feel energy. I sound sad and miserable but I’m not, I’ve a loving family and good friends, not forgetting my dogs 😊 I’ve a good home but I crave energy and less pain, thanks for listening 🙏🏻

cuddlyka profile image
cuddlyka in reply to Tullyanne

I too enjoyed reading Aishah50's post as like you Tullyanne I feel the guilt when I can't do what I used to.

Until a few years ago I managed my father and stepmother's business and was always made to feel guilty by them if I was ill. That guilt has stuck with me I think and is going to take some working on.

After years of just about managing to cope with my autistic son (now 24 in care home 6 hours away from where I live and continues to be a worry for me) and my tearaway teenage daughter (now 30 and generally a great support), I then went onto managing the business which was extremely stressful to say the least. I am now at the stage whereby I am going to work on not feeling guilty about being able to do very little at all. I find it hard to get out of bed but my symptoms get worse as the day goes on and never get any real restorative sleep.

I like your description of "an everlasting hangover" and do admit that from time to time I give myself a normal hangover as I find it more bearable the the Fibromyalgia one!!

Wishing you less guilt and more energy x

Tullyanne profile image
Tullyanne in reply to cuddlyka

Thank you for your reply, we’ll both work on the guilt problem. It sounds like you’ve had an extremely stressful time, let’s be good to ourselves 😊

Hi there. I got my diagnosis quite recently too. Some of my family have understood my explanation of fibro but some are not getting it!

We spent a few days with my OHs family recently and I had a couple of really bad days. The next day they were asking if I was "better" now I had spent a day in bed like I was just being lazy. It is hurtfull but I just try to ignore it - it is difficult enough feeling so bad!

Good luck with your family - I hope they understand you and give you the support you need especially when you are struggling.

Take care


cuddlyka profile image
cuddlyka in reply to hf1981

Thank you for your kind thoughts Hilary, my daughter I think is the most likely one to understand and give support, plus my Auntie D. Mum is due to visit in November so will be able to sit her down an explain it more to her.

Since resigning from the business I have little to do with my father and stepmother (who have now retired to Portugal) but he seems to think that becoming a Vegan would solve everything and considering my stepmother is a retired narcissistic psychiatrist I'm not surprised by their email response! Have to laugh...

Best Wishes


Tullyann & Cuddlyka


You are not put on this earth to be someone's personal gofer, slave, cook or cleaner. (Small children aside) If you want to and are able to all well and good. You should never have guilt attached to saying no. The person expecting or asking for your help shouldn't use emotive blame inducing language to cooerce you to help them. If they do then a) They don't value you b) They are exploiting you.

Keep saying those words "coerce and exploit" in your personal narrative and the guilt will miraculously disappear, leaving you empowered and enabled to say no. Remember if people exploit you it is because you allow it.

Personal affirmations to be repeated every day.

I deserve to be happy

I will not allow myself to be coerced or exploited.

I do not need to feel guilt about saying no.

I will promote self love and treat myself kindly.

I will not push myself past my limit just to make things easier for other people.

I will do more activities to make me happy.

This illness robs us of so much we do ourselves a disservice if we don't value ourselves enough to make ourselves happy. I try concentrate on what I can do and fill my day with things I love. I love a hot bath with Epsom salts and essential oils followed by snuggling in bed with my Bengal cats, a strong cup of tea in hand and a good movie on the TV. Absolute bliss as I remember hectic Sundays past trying to fit in cleaning, cooking, and shopping all in one day. Do I want to be ill?, no, but I have found pleasure and happiness in my day and employ lots of selfcare strategies for when the pain makes me cry. Have a lovely Sunday everyone.

Hi Aisha50, thanks for your reply and good advice, hope your Sunday is a good one 😊

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