How can I make them understand?

My parents just don't grasp Fibro at all, I've tried everything to explain it to them but they remain really tough on me. Today, despite being in the midst of a really bad flare, the forced me to go to an Aquacise class, which was really hard going, and well beyond my capabilities. It took every ounce of strength I had left to climb the stairs to my bedroom afterwards. I decided to go back to be with the electric blanket on to ease my sore muscles and recover my strength, but now they are shouting at me saying I can go to bed in the day time and I should be up and doing. How can they not understand how much that will have taken out of me? :( they think it's depression putting me in bed when it's just lack of sleep and endless pain and fatigue :(

23 Replies

  • Oh I do feel for you. It can be hard for family and friends to understand. Have you shown them any info on fibro such as the spoon theory or some of the very useful information sheets from our parent site - click on the butterfly at the top of the page.

  • I've shown them endless things, I've given them books to read, but them seem to focus only on the bits that suit them. So exercise is one of those, and even if I am in agony I will walk my dog for at least 45 minutes, and can be crying in pain, and have fallen over several times due to my hypermobility syndrome, when I've been so tired that I've just lost my balance, and gone down hard like a sack of spuds. I'm sure they think I make it up :( so now the water based exercise which my consultant recommended, but starting a few minutes a day. That isn't possible because of the times the place is open and how busy it gets so I agreed to do the aqua aerobics, but that is straight into 45 minutes from nothing. How on earth can they not appreciate how crippling that is going to be for the first few months, particularly during a flare? I could sleep for a year now but they make me feel so lazy and like a looser

  • Hi Jigsawcat,

    First of all I want to say that I really feel for you. Aside from the judgements, it's so awful that they won't let you rest and come and disturb you in your room. I am 19 and living with my parents (I stayed away from home at uni between September and May, it was really stressful) and I often feel misunderstood by them too and it causes a lot of frustration as well as additional stress. But I've had a think about it and putting myself in their shoes I think I can understand why they're so hard on me sometimes. It comes down to the fact that I don't think parents can accept seeing their children suffering from an illness and not living their lives in the way they'd hoped because of it, alongside the point that it's invisible, making it easier for them to delude themselves into thinking that it's not really happening. They refuse to see it. Or they only half acccept it by not acknowledging the consequences or limitations that we actually get from having and living with the conditon day by day, so they distort the idea of control we have over it (like with making you go to your aqua-class).

    I think parents envisage in their head what their children are going to doing in their lives when they reach a certain age, and when this doesn't correspond with the reality, they get frustrated and take it out on us - also, they want something to blame other than the condition itself so we get it instead.

    I hope this has shed some light on the situation with your parents. I know it doesn't make being misunderstood any easier, but hopefully this will help reduce any possible resentment or anger you feel towards them. They are facing their own challenges with the condition in a different way to you, the one who suffers it. So there is a conflict there. I know knowing all this doesn't actually change your situation though.

    I hope you can find a way of getting the help you need. I think, if your parents are willing, family counselling would really make a difference. You could try Relate? Hopefully then you and your parents can work adjusting to the reality of this situation together - with the guidance of an unbiased, third party (who isn't affected by the emotions you are parents are experiencing) making the judgements Then hopefully together you can work out a compromise to suit everyone. :) Lastly I want to say that, even though I can see you are suffering, you are doing really well, be proud of yourself. :)

    Hope this helps.

    Soft hugs,

    Fay xxxx

  • Hi Jigsawcat

    I am so sorry to read that you are not being afforded the understanding that you deserve and desire. It is never easy with loved ones when it comes to these sorts of things. I was wondering if you have ever taken them with you to medical appointments? So they can experience first hand exactly what you go through and what it is really like?

    It might help if a sympathetic GP or Consultant can explain to them that this approach does not help you neither physically or emotionally?

    I want to wish you all the bets of luck with this.

    Ken x

  • Hi Jigsawcat. You could try getting them to go on here and post a question, along the lines of 'My daughter has fibromyalgia. What do I need to know?' I'm sure that loads of people would respond. Or you could try and find a fellow sufferer who could talk to them? I'm in my 30s (nearly 40) and married, so for me, the problem is not what my parents think they know about FM, but what my husband thinks! Actually, he's the one always telling me that I overdo the exercise. Finding the balance between FM and exercise is still a HUGE problem for me. In my ideal world I'd be out on my bike almost every day of the week... and sometimes I am! But in my current FM flare-up state, I just can't. There is no point trying. I know it's really hard, but I guess you've got to somehow communicate with your parents that FM is an illness that needs to be carefully managed (by rest, good sleep habits, relaxation, avoiding stress, healthy diet, gentle exercise, mindfulness / meditation, CBT, support from friends / family etc. etc). It would be ideal if your parents could cooperate with you to help you manage it. Actually I think they NEED to if you are going to manage it. My husband and kids (and my whole family) have had to adjust their lives around FM, even though my FM is not as serious as some peoples. They don't think I'm lazy or depressed. They just know and understand that I have certain limitations. That's life with fibromyalgia. You could try getting them a book, such as Fibromyalgia for Dummies, so that they can read up on it, but the main thing that they need to grasp is that there is no 'one-size-fits-all' solution for fibromyalgia and exercise is not some kind of magic bullet. We all wish it was, but there isn't one. Maybe they have unreasonable expectations about what 'managing fibromyalgia' means... Best of luck. Let us know how you get on.

  • Thanks for this, I probably should have explained in my initial post that I'm 37...I've been a lawyer, high flying career girl living hours away, on the property ladder, single and independent for the last 13 years, when I developed FMS, depression (diagnosed as bipolar 6 months ago) then contracted encephalitis and meningitis and was left with CFS from that, as well as memory and cognitive problems. So the move home was not easy and not what any of us had planned for really. I know it's hard for them, and the loss of my independence is really tough. We are struggling to adjust, but the sticking point seems to be my levels of fatigue, I just don't think they believe it's possible to be bone tired and in pain all day, every day and so they chase me out of bed like I'm in some depressed state and have given up on life. That is not how I behave in that mindset! I fought so hard the last couple of years to cling onto my life as I knew it, and lost it anyway, I just need some time to sit still and be calm, and it's like they aren't letting me just be for now, when that's all I want, just a little bit of quiet in my head and some physical rest. I don't know if that makes sense to anyone? It might explain why I'm not getting through to them if it doesn't. I don't need to be flogged round like Kevin the teenager, i need to mourn the loss of the life I had and find a way to work with the one I've got, without it being a struggle. But that isn't getting through, nor is the Fibro! X

  • I totally understand where you are coming from as I am in a similar situation, as are many of us. I think your parents are also grieving for the life you used to have and their role as parents who where proud of you and what you had achieved. I think there may be a little bit of worrying about what other people will think about your current situation which reflects on them, whether they would admit it or not. As a parent of children who have faced obstacles in life, all I want to do is make things better, even though that is impossible at times, and this is where your parents are coming from, but with limited understanding and acceptance. It might be helpful to take them with you to see your GP or rheumatologist as, sadly, they are more likely to accept the word of someone else. Good luck, Linda.

  • I have fibromyalgia and my son has myasthenia gravis. I realise how difficult it is for him but I do still try to encourage him to get out and do stuff just because of the saying 'the more you do, the more you can do'. Sometimes it works and sometimes not. But I don't want him to just give up as I know how easy it is to do that. The difference is that he got it at 16 when he was just starting out. I'm sure your not in need of as much cajoling as him but I will say that it's very difficult to watch your child (of any age) go from being a go getter to being bed ridden. It sounds like your parents are grabbing at any chance of a 'cure' for you but are not able to comprehend it all. Believe me, if I didn't already have fibro, I'm not sure how I would have been for my son. They will need to grieve the for your old life just like we all do. It's very hard to watch your kids suffer. Try again to make them understand and let them know that you know they are trying to help.

    After over 8 years of this condition one of my sisters only began to understand it after she recently met someone else with it. My other family members all compare it to their back/foot/forgetfulness and tiredness etc because this condition is so hard to imagine if you don't have it.

    Good luck

  • Thank you, that makes a lot of sense. I'm getting counselling to help me get through this but but both of my parents have refused, and I actually think they'd benefit greatly from it. I feel so guilty that they are always sad and snappy because of the way things have turned for me xx.

  • hi I can totally sympathsie with sorry you are going thru this.i don't talk to my mum or family anymore about it as thye dont understand our conditions and I was told by rheumy to get more exercise-even after I told him i walk my dogs two hours a day(that was back in 2012) -as like you I have dogs to walk and I can be crying in pain after ,the other day I got a bus home and felt like I was going to collapse and kept shaking myself are not lazy or a there some info on this site you can give them-

  • Awe jigsawcat hunni I really feel for you it definitely not nice for you sweetheart as I no what it is like my kids tell me there is I'd nothing wrong with me and my reply to them is do you no what my is like do you try it and see then you'll no what is like to be in constant pain it shuts my kids up.and my own mum don't even ask if I'm okay cos she knows she has Parkinson's

  • Morning Jigsaw,

    Oh Hun it is so difficult to accept the changes in our lives. Your resume shows us a highly intelligent, active, fit resourceful go getter who has been unlucky enough to crash with some grim debilitating illnesses.. There are many of us in similar situations in fact fibro does't make any distinguishing choices, it just takes us!!.

    How hard to explain to your parent hard enough to understand your self. For them to see their beautiful daughter who I am sure when made up and prepared for battle looks amazing explain to them she cannot do things - very hard. I am going to chicken out here I don't know the answer. I think if my Mum was still here I would sit her down and go through it again & again. Hope fullly she would then explain to Dad.

    There are many articles now that Fibro is medically recognized so get them set up by a computer and take them that way.

    I am sure you have ability to get through to them Good luck

    We are always about if you need a rant.


  • Hi jigsawcat :)

    It's such a shame that you're going through this and it is something most of us can associate with having experienced or are experiencing it.

    I used to worry all the time about what my family, friends, and other people think and it's not healthy as the stress of it contributes to our physical and emotional pain. However, pain and fatigue aren't the easiest of things to describe to someone who doesn't experience it themselves making communicating our pain and fatigue a difficult task.

    I don't know you or your parents so cannot directly help you but am sure that your parents love you and mean well by there actions. I personally believe that being active even to a small degree is important so maybe the answer here is to compromise with your parents and suggest that you aren't strong enough yet as you need to rebuild some stamina which will be a long process, I should know! as I am there myself it is a painful world jigsawcat and can't imagine what it must be like not to have your own space anymore and to have people telling you what to do every day when you can't even think about it it and your body welds itself into the bed in retaliation.

    I wish I could be more direct for you and give you some literature and links but I know that you have already tried them many times before :) so wishing you wellness and sending you fluffies and smiles there is always someone around to listen :)

    {{{{{{{ jigsawcat }}}}}}} fluffie hugs

    :) xxxsianxxx :)

  • I'm so sorry to hear you are having these problems. It can be so hard to get people to understand how fibro affects us. You must get as much back up as you can from where ever you can, whether it's from your GP, info leaflets or maybe even from this support group. I really hope they can gain some understanding soon so that you can get the support you badly need. Don't forget we are all here for you. Gentle hugs and take care. Xx

  • If you are 16 (and sometimes younger) you can go to the doctors alone and talk confidentially and get a letter which tells your parents what to do

  • Hi cazlooks, hope you are not too bad at the moment :-)

    Jigsawcat is in her late thirties, which is why it is so difficult to return to parents who treat you like a child.

    I'm sending positive vibes your way :-)

    Foggy x

  • Hi jigsaw sorry your having such a rough time , I know you move home for the support but do you not think maybe you might be better living on your own Maybe just down the rd or so , they could be close enough to help if needed but far enough away so you get space I have been having a flare for 6 months been off work since the 30 of jan , bumped into a work colleague this morning and he didn't recognise me till I spoke and said hello . I live alone and the first 6/8 weeks I literally slept that was what was needed ,if you were left to rest you could get your flare under some control it sounds like you are being pushed and pulled in every direction except the right one , it is hard having no one with me but if I get really bad my daughter turns up and helps she is home at moment and constantly telling me to rest ,tough love is fine in the right place but you need to be level before they push and it doesn't sound like that is where you are yet I wish there was someone who your parents new and respected who had a more knowledgable expectations could talk to your parents before to much damage is done , or maybe some one local to you with fibro perhaps if you speak to your GP about some sort of help on this a health vistor doesn't just look after new mums or a social worker try your local county hall they might be able to help you .take care Chris x

  • Hi, just read your message, and it made me quite sad. Fibromyalgia is a very difficult illness to understand. People look at you, and most of the time you don't actually look ill. So it becomes difficult for people to get their head round it all. I was wondering where you lived in the country, (I live in Hertfordshire. If you live nearby, feel free to contact me, and I could try to help.) Please don't try and worry too much. I think perhaps that your parents would benefit from talking to your rheumatologist, or maybe at Arthirits UK to get a better understanding of fibromyalgia. Also if you are local, I would be happy to talk to them myself. Good luck with everything, and lots of love xxx

  • Hi me again I just realise I kind have the opposite problem , I have just got really upset with my daughter as she won't let me do anything ,she is doing virtually everything an to be completely honest we had a blazing row about an hour ago because she seems to think I am completely incapable of doing anything , I thought it was lovely last week because I was really quite poorly but I feel I can do bits and as soon as I start to do something she tells me to stop , I won't go into to much but it got to the point I said it's my house , I am the parent etc , she is totally exhausted and as crabbie as hell and she won't let me help I think we need to get our family's to meet in the middle take care xx

  • Hi Jigsawcat,

    I am Mum and Carer to my 22 year old daughter who has Fibro, and I was about to offer advice from my experience, but then realised that you were in a different position than I had first thought. It's strange how we all make assumptions sometimes, like us thinking you were still a minor living at home, but I was wondering whether wrong assumptions might actually be the key to your problem:-

    Needing to be back home at the moment, you may have assumed that your parents would understand why. In turn, they might have assumed that you came home to get better and are doing their best to "fix" you. I wonder if it would be worth you trying to explain, not the intricacies of Fibro as an illness (I know how complicated it can be symptom wise), but explain how you need them help you right now, i.e. supporting you while you rest as much as needed, and only doing exercise when you feel up to it. Also, rather than try and explain why you cant do the amount of exercise they think you should do while they are trying to make you go, perhaps you could pick a quiet moment when there is nothing much else going on. You could also mention that a big part of living with Fibro is pacing yourself. It's the hardest thing to do, but people with Fibro should not do more than they can easily cope with, (only you will know how much [or little] that is at any one time) otherwise you never get over the tiredness phase.

    What others have said about their parents on here is very true, we do go through a grieving process when our children are struck down by a debilitating illness. We are not expecting to see our children (however old) failing to progress. We also go through a period of blaming ourselves for their illness, particularly when there is no other apparent reason for it. My daughter was first ill with chronic pain when she was only 10. It started off with a diagnosis of Juvenile Arthritis, but has developed into Fibro, depression and fits. We do blame ourselves, whatever the doctors say, we know that she is made from our gene pool, so how can we not be somewhat to blame?

    It is very hard to see her get up for breakfast and then have to go straight back to bed because she is too tired or in too much pain. Sometimes she is in bed for most of the day and I have had to find the middle ground between encouraging her not to give up, and allowig her to get the rest she needs. Please believe me when I say it has taken a l-o-n-g time to get where I am with her now. I'm sure that acceptance will come to your parents, but they will need time and understanding, because they are probably in pain also, but in a different way.

    I hope that this has helped, you will always find friendly, encouraging words here on this site.

    All the best to you.

  • Anbuma is right sometimes there

    not much support from family.

    I feel you should do what's best

    for you. Don't push yourself you

    Could make the flare even worse.

    Don't let others influence what

    How you feel. This can sometimes be a lonely condition.

    But you always have us to lean

    On. X

  • Hello Jigsawcat,

    I can absolutely understand the feeling of needing to shut out everything to steady your mind, clear your thoughts.

    There's nothing worse that your whole world whirling around in your head plus the pain and fatigue.

    I wonder whether you are truly accepting your limitations?.

    I feel like you are pushing yourself too hard, to show that you are doing everything you can which would please your parents, and do what the Doctors say would do you good.

    You couldn't get the water exercise class which sounded gentler and felt forced to do 45 mins of aerobic exercise. It is clearly beyond what you should be doing, I would stop it immediately.

    Because you were so vital and fit before, it doesn't seem possible that you could be so debilitated, and I feel you need to give yourself a break.

    Exercise only keeps a certain amount of stamina/fitness going, the level of fitness and strength you have will rise and fall with each passing day. It will not regain you your house or previous life. But I'm sure you know that.

    You are way above the age to have your parents be this way with you. People don't usually do that unless they think you are incapable of pushing yourself. You will be ok, you can and will survive, life is different now, but you will find a rewarding life

    I don't think that any amount of books or films or anything will help them understand because they have seen you striving with your condition, knocking yourself out, walking the dog til you're fit to drop, and previously fighting to hold onto your previous life.

    Losing that much must have hit you so hard, esp. after battling to keep it for so long, have your parents been super protective of you?.

    Maybe, because you have shown fighting spirit they are afraid that when you go to bed during the day that that is a sign that you are giving up, you need to rest to try and alleviate the draining pain, not because you are depressed but not being able to rest mentally and physically is dragging you down to depression and desperation.

    I know you are relying on your parents for somewhere to live, are you not able to get help with getting your own place due to illness?. Perhaps telling them that you might think of moving out into your own place may stop them thinking that you are too fragile/depressed or lazy or faking things?.

    I think a truthful conversation about how they are making you feel, that because of their actions and the loss of your previous lifestyle are making your illness worse.

    The key thing someone with Fibro needs is a calm, restful atmosphere to live in, so that not just they come to accept your limitations whilst seeing just how much you may be able to do on the good days, but you have the chance to adjust to it all.

  • Surely your high stress job as an attorney moved you in the direction of experiencing the fibro; you were likely already prone to it.

    Lots and lots of people are in denial of things like fibro, mental illness, etc. I can understand the denial of parents and friends - I even doubted myslef and was ashamed for a long time.

    One thing I have done with my fiancee was take him with me to the doctor so he could get his own consultation. I even recommend going to a psychiatrist or psycho-therapist with them, not only to work on communication, but so that they can understand that it isn't in your "mind."

    In the meantime, if you have to go to that aqua class, just don't push yourself, get out of the water before you think you should, stand there and feel the benefits of just the water, and don't do anything but what comes easily.

    God, I just hate it when people resist our illness, no matter what the reason. I do understand that they want you to be healthy. They are grieving. So are you.

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