How do I make them understand?

Hi everyone,

Just wanted to ask how do people get their families and friends to understand what they are going through?

Im having a big flare up atm which is causing me to have a bit of a melt down - crying all the time etc..

I think my family and friends try to understand but it seems like they just think im moaning and exaggerating. I have tried to explain to my hubby a few times and gave him some info to read when I first found out. Because I try so hard to get on with life and make everyone think im ok he seems to forget that I am not ok and that I am in constant pain and always exhausted.

The other thing is my hubby had to have a shoulder operation just after I got diagnosed and it went wrong and he ended up having to have another op - long story short he never fully recovered and always has pain in his shoulder. The reason I am telling you all this is because I find it very hard when I try to tell him how much I am struggling he compares fibro to his shoulder pain - I know he is in pain but find it really upsetting to basically just be brushed off because he has some pain in one area. I dont know if this sounds terrible of me of makes sense to anyone.

How did everyone get their husbands/ families to understand??

xx

23 Replies

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  • Morning Becky

    Have you read the spoons theory it may help and then get your friends and family to read it It explains how we use up all our energy and have nothing left there was a link to it yesterday or day before I will look for it xgins chin up it will get easier! gentle hugs ((((((((((())))))))))))

  • Here you go Becky butyoudontlooksick.com/ hope it helps. You know our partners always say their pain is like ours so it is hard to make them understand what we feel. Good luck xgins

  • Hi Becky.I think we have all had this problem at one stage with this horrible illness and a good way i found is the do's and don'ts when dealing with someone with fibromyalgia. The spoon theory too is excellent however it is quite long and one or two family members seemed to struggle to concentrate all the way through lol! You will fing the do's and dont's one one of my previous blogs if you can look through them (dont worry, theres not many!) Gins always gives really good adviceand she will lead you down the right road.Take care and gentle hugs to you....Charlii xx

  • do you have the links to do's and don'ts please

  • I can understand how you feel fi a person cannot see some physcial thing then they think that there is nothing wrong, i have cried with the pain i am in i took my wife to the doctors and he explained what i am going through i now have severly prolapsed disc in my neck affecting all my left arm and have numbness all the way down my ar m i cannot tell you what to do but do not explain to anybody what you have you know what you have so you dont need to worry about what other people think becuse you are the only one that matters i understand what you husband must be going through but stick toghter sit down and talk to each other and listen to each other this might seem daft but it has worked for me with my family they now understand and do help me as i cannot do a lot now but i still carry on i will have a good day and then suffer but i now i have enjoyed my self on that day good luck keep a smile one your face

  • I think its very difficult for others to understand what you are going through because as someone has already mentioned,you cant actually see it,and in my case ive had x rays,mri scan,been to the osteopath etc etc and everything seems normal,so people assume that theres nothing wrong apart from being fat( due to meds,lack of mobility and eating because im upset or bored),and if i loose a few stone that it would cure me. My husband is very supportive,as he gets sciatica he knows what its like to be in constant pain..Unless theres a mass information drive to make the public aware of fibro and the impact on the lives of sufferers,then i think were fighting a loosing battle...best wishes xx

  • I don't think any one understands only people who have this fibro,

    People say how sorry they are but don't really understand as mostly

    We look ok.

    For me I have got people close to me to read as much as they can

    About fibro, for other people if they can't understand or don't want to

    I don't bother as they don't really care anyway.

    We can only hope that one day some one will stand up for us and

    Have a cure with so many of us with this it must be costing the country

    A mint of money

    Hugs viv

  • Get hubby to see this small video it tries to explain what we go through, I feel you pain xx

  • I can only see a black screen? X

  • I have sobbed through this video. Thank you SO SO much for posting this, this is the closest thing i have ever seen to how i feel x THANK YOU X

  • Try love letter to normals

  • Oh Becky my heart goes out to you. Although I have had ME/FMS for 23 years now over the last 10 weeks or so it has really escalated, probably due to my age and I also have developed Glaucoma.

    This morning has been particularly bad and the nausea is comparible with the pain I experience every day. First thought is to get to the hospital, but what for? They will take all kinds of blood tests, find nothing and send me home again!! Struggled to bathroom this morning and felt the back of my head was going to explode they lay down and wanted to be sick. Anyway have managed it downstairs and taken some anti sicknes tablets abd just watching the Cenetaph matchpast and wish I was as fit as some of those older people on there. People say just push yourself, but I can't I feel too weak, but like you say,, noone understands do they.

    I can empaphise with you regarding your husband. Mine is at a loss at what to do when I am like this. He's sat for hours in A & E many times with me and quite understandably cannot figure me out or the medical profession for that matter. Luckily his health is good although he is 77 next month. Fortunately, after all these years of my suffering he realises I am not the person I was and does his best and takes resonsibility for all household chores, albeit not as well as I would like!! but beggars cant be choosers can they.

    So my love, don't think you are alon ewith this de[perate, frustrating, cruel illness. It's so hard not to bite your other halfs head off when they dont seem to understand but it must be so perplexing to them. People do think your moaning all the time and you do lose your friends and relatives I know as it has happenned to me. When people ask how are you (thats when I see anybody) I just say "Oh, OK". Even dread going into garden in case the next door neighbour comes out and asks me. Just cant be bothered explaining because no one understands and I will have wasted my precious energy trying to tell them.

    So chin up hun, at least you can come on here and have a moan as we all empathise with you and know what you are going through.

    Take care and don't be too hard on the old man as he needs you as much as you need him.

    Avril.Liverpool.X

  • I don't know how you make them understand I two have been same for 2 weeks finding it difficult wondering.why I'm goin on...I feel for you and your not selfish....just exhausted by it all...all best love....xxx.

  • Hi,

    My children are all grown up but really do not understand how I am. On top of fibro I have ME/CFS & chronic IBS. My husband is wonderful, and comes to every single specialists appt I have. This has enabled him to see just how poorly I am. When I feel gd he stops me from over doing things (when he can). I have a constant battle to try to keep my weight down because I'm not very active anymore. Today I'm in bed!! My hubby doesn't care wether I am fat, thin or inbetween, its me that puts the pressure on myself. He just wants me to be as pain free as possible.

    With your husband, just tell him that you are not in competition with him, u just want him to try to understand. Maybe take him to your next appt, so that he can see what the doctors have to say? When you got married he married u in sickness and in health, and vice versa. I really hope u can come to an understanding together xxx

  • Hi everyone. I have CFS aswell as the fibro and I suppose I should consider myself lucky that most of the time my pain is minimal...more stiffness and aching than profound pain. I also have IBS and ongoing sleep problems...some nights I dont sleep at all till around 5am in the morning. Then there's the brain fog! However the fibro gets much worse if I try to be physically active and I dont have the energy to keep up with the chores. The chronic fatigue is bad most of the time and I have no family support at all. I'm now considering shopping online because it's so difficult for me to find the energy to get out of the house. I'm estranged from my 2 oldest adult children...for over 7 years now (they wont say why...in fact they wont even acknowledge me) and my youngest son rarely gets in touch. Look wise I'm a young looking 65 year old, still hoping to find a partner. However the CFS and sleep problems have worsened this past year and it's very difficult because it's usually around 4pm before I feel ok. I recently lost a potential relationship because of being unable to make him understand. I had to break 2 arranged dates with him and when he visited, I was so exhausted that he just gave up and went home. Well to the world of fibro, ME and CFS. I am normally a positive person but I get a bit fedup with constant struggling to have a normal life. Why isnt the UK doing more research and trials?

    From Barbara in Alvaston, Derby, East Midlands, UK

  • It is difficult to get people to understand. I too would recommend the spoons theory to your loved ones. Also ask them to look up fibro on the net and see for themselves the vast array of symptoms we have to deal with. I'm not too good at the moment as depression has taken a hold again at the moment. I had a good chat with my mother-in-law yesterday and I grossly underestimated how much she understood my illness. In fact she seemed to grasp it better than I do. I'm having difficulty accepting my limitations at the moment, even though I've had fibro for 5 years or so. My doc is going to refer me for counselling, perhaps this is something you and your husband could have a think about as you've both got illness and difficulties to come to terms with. Hugs xxx

  • Hi there and hi all,

    think everyone pretty much says the same and it is down to those around you whether they want to understand it or if they can be supportive or not.

    Your hubby and his pain ?? how does he manage it ('man flu)? or is he tough?

    Yours is a bit more permanent is how i say things.

    HIs may never go away if gone wrong but it is a case of yours is allll over not just your shoulder, one day it can be like his shoulder and another some where else but in general you suffer daily.

    Flares are as i explain think of you having an operation and when you come round and cannot do anything and whether you try to or not you have to stay rested or you will make matters worse.

    I have had numerous operations and the recovery is hard work dependant on what had done and how i explain my life is ..when you have an operation and you cannot carry anything even the kettle and even the 2litre milk is heavy lifting a bottle of pop is heavy and that you tire extrememly easily is how i say my life is now its a never ending operation.

    There is pieces you can print off for family and as above you have, for likes of myself with BHMS/EDs there is a family and friends piece which i think is kind of appropriate too on the HMSA site (we cannot post links as not Admin or volunteers) so just a direction to go in.

    it is pretty much as it is.

    Those in my life who dont seem to be around then thats up to them now i dont hold grudges but i know who is true now i will continue to smile and say how are you ! xxxxxxxxxx

    you let it out when you need to and make sure you keep your DR informed too as its like a diary if you are so down temporary help can be given same with sleep and muscle spasms etc.

    Huggles to you and yo can chat to any of us anytime you like..:-) we may be in different time zones but we will reply xxxxxxxxxxx

  • Try reading this to him,

    A LETTER FROM FIBROMYALGIA

    Dear Miserable Human Being,

    Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

    Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.

    I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

    Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

    Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

    In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

    Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

    Have a nice day!! (ROFL),

    Fibromyalgia

    I have a printed copy of this and let people read it!!!!

  • That's brilliant Jomple, a great explanation! :) xx

  • Thank you kay, what an amazing video....it says it all. Have posted it on my fb page for family to watch xx

  • Love it Jomple it sums it up in one go x

  • Thank you so much to all of you for your kind words and helpful suggestions! Had a really good talk with hubby this weekend - didnt want to talk about fibro initially but ended up being so lovely and supportive. Not going to Uni this morning - going to see Dr , hopefully she will be able to help me get some relief!

    Hope you all have the best day possible

    Lots of gentle hugs to you all xx

  • I think we have all been there on the 'how do I explain this' route. And it really is a tricky one. I know of people whose family and friends have labelled them as 'lazy', 'faking it', 'making a mountain out of amole hill' and many more. ANother goo thing would be to print off some of the poetry in LibertyZ's poetry corner and keep that to hand. We all seem to be bale to put our feelings better if it is written down, some times the spoken word just does not sink in. I hope you feel better soon, being mid flare myself I know exactly how you feel xxxxx

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