Since my diagnosis over two years ago my friends have slowly slipped away to the point that I rarely go out with them. One because I am exhausted, fatigued and in agony majority of the time.
I also live at home with my parents. They certainly don't seem to understand Fibro or maybe they are in denial. I find it very difficult to do a lot of house work so I do bit here and there, however it doesn't seem to be enough even tho they see me in agony. Or when I'm agony and in bed my dad will huff about saying 'its something new with you everything night'.
It makes me upset at the fact they don't understand how much pain I am actually in. My mum was a nurse so she knows a bit about it but I have offered to give them things to read but thy don't want to.
What can I do? Are they in denial?
It's making me feel so low and making my pain worse!
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charlie_red
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That's really horrible for you! Other people's lack of understanding is a terrible additional burden for people in pain. They can't see what's wrong and they can't feel it so they reject it or ignore it! They certainly understand more when something goes wrong with them! Have you been through pain management? Could you get a referral from the GP or talk this over with him/her? You can't manage to pace yourself effectively if you feel under pressure from your parents so the pain may well flare up and feel worse! Poor you. Hope you find some good suggestions to help from this forum.
Hello, thanks for your post! I've been attending the pain clinic for two years and have been on the pain management course. I have been referred just recently to go on the longer pain management course as I struggle to pace and manage my pain on a day to day basis. My mum has been to several appointments with me, but I think your right, they can not see any 'physical' injury or cannot feel the pain.
Hi, I have only recently joined this group (yesterday) after looking at all the posts and recognising so many feelings that I myself am having. I have experienced chronic pain for the past 12 years with no real diagnosis and the isolation it can cause along with the lack of understanding by so many people can make it worse.
Keep trusting your own experiences is all I can say. Pain is real and only you know you. Hopefully you will be able to get some support from this site.
Stilltrying don't give up...I started getting sick at 17 yrs old and now 61 yrs old,they found my lupus 10 yrs ago...but it was" in my head"Yep it was I have since had 3 brain tumors two which were removed and now and inoperable one that will take my life....keep on researching,keep trying new Drs....just don't quit.!
Hi there. Like others have already said, it's very hard goto people to understand what it is like to be in pain 24/7. When I lived with my mum and dad I made them watch videos on my laptop and read leaflets and things I had printed off the net. I could tell they didn't take me/it seriously but over time they started to understand a little. They will never fully understand as they don't have it.
As for friends unless you do the same thing it is even harder for them to understand as they don't live with you so they don't see you all the time. It may seem selfish of them but they won't realise they are alienating you. They will see it as you don't want to go out with them so why should they stay in with you. Unless you really open up to them you will loose them.
I know its not a nice thought but do give it a try even if it means braking down in front of them.
The way I got through to my friends was by making them go in my wheelchair for 10 min and telling them to imagine going on a night put and think how hard it would be. A few of them got me, they are my friends. The others are people I know.
I know I haven't been comforting but I hope this works for you as it did for me.
I wish ypu all the luck in the world!
Hello BOB here
Many of us suffer from those who think they know us, They never see what is going on inside and the pain we suffer caused by our conditions. When I first came down with my condition my family never talked to me regarding the pain I was suffering from. They preferred to listen to people who thought they knew me, many of these so called associates where at work, where in the future would be bad mouth me in front of family members, they believed them and eventually I was medically retired from the company, my family then listened to a mentally ill patient who was a work associate. Now I have been alienated from family who basically have nothing to do with me. They see the person not the disability so since my fathers death. They cannot understand my condition. Personally if I had one leg they would understand that and the person would gain all of the sympathy, none would be pushed my way.
The reason I mentioned this is I understand the pain the able bodied can dish out we have therefore to be strong in our own mind, we understand how some able bodied people think regarding disability so we all need to bite our lip. This is the wrong attitude to take,why should we placate ignorance
and carry on, we need to be strong. This site always gives support to those who suffer chronic pain.
You do not say how your parents feel regarding your examination results and attainments that you have achieved, they should feel very pleased, I hope that they can show how proud they are with eryyou. They should therefore feel under the circumstances how strong and determined you have been to get where you are now.
All I can suggest is talk to them, you do not need to placate their feelings towards you the opposite is the case.
The loss of friendships is very hard. Can you not get involved with activities at the University, I know it is hard although you may eventually have a more broad minded circle of friends. Try something like that.
Friendship is people who accept each others faults and disabilities and learn from them
So you now need to be strong and determined, if you need support now you know where to find it
Last time I went home to Wales I met up with an old friend, her opening statement was 'for god's sake nutty are you still in that chair, come on pull your finger out' I looked at her and replied 'omg are you still that stupid after your parents spent so much money on your education?'
She appoligised and we sat and had a very deep conversation about crps and chronic pain. Between us we decided a lot of ignorance was born from fear, fear that her once capable friend was struck down with disability and pain and fear that tomorrow that it could be her in that chair.
It is very lonely to be in a crowd of people that only want to see the healthy you, the capable you and the person they always hoped you would be, parents of all people want the best for their children. Maybe writing a day diary explaining how different things in that day effect you and make you feel. Think about your asperations and future plans and discuss how you can achieve them with your current disability, is it going to need special allowances? extra time? transportation? flexible planning?
Showing those around you that you still have dreams and plans but that those plans and dreams are going to be more difficult to achieve may help your parents understand you better and your friends rally round to help you.
Hi, I agree with you, the big problem is that people who knew the " old" you, just want that person back. They do everything they can to try and maintain the old relationship. Deny to themselves that you are in pain, expect you to get involved with all manner of activities that are now way beyond you. We keep trying our best to live up to their expectations but I think we all will arrive at the point where we just have to do what is right for us. Whether that loses us a friendship or family members do not include us in their get together,s, or stop inviting us as we never accept the invites, then so be it. This is the point I am at right now. I have enough to deal with on a daily basis. My husband and my daughter know exactly where I am at and I am grateful. have a good day .xx
Annie, cp and illness certainly sorts out genuine friendships. I don't think people realise how mean they are being, and maybe if everyone stopped racing around at 90 miles an hour, and stopped to smell the roses, we might just be able to meet them at that point.
One relative of mine insists I go visit them at the other end of the country 400 miles away (because I never visit them at home) but they have a holiday home 40 miles away, and there are there every 2 months or so, and we go (note we go ) to see them there. Am I missing something? Surely the important thing is meeting up with them, not the location? But this is more about me calling the shots and seeming to take control away from them. I really don't have the energy to waste on such battles any more. And have said if they want to meet up then they come to us. Not seen them for 8 months, so all I can conclude is that location really is more important to them, than seeing me and my family. It hurts.
I've only ever come accross 3 people (1 colleague, 1 visiting physio, 1 course leader) who have had true insight and noticed the little changes in me, and suggested breaks, or a little walk somewhere before I did. Or in the case of the course leader, changed the course to include something about illness, disability in the work place, (it was a work related course) thus raising a few more peoples awareness. The best bit was when we had to list our activities before getting to work. Others were chasing kids to school, dropping partners off at their work, me, I was doing my exercises before getting up so I could walk without falling over, having a rest back in bed after my shower, to keep my muscles warm. Getting dressed in bed to keep warm. Then sweeping the floor to kick start my body into movement and waiting for the nausea to pass. I eat breakfast even though I don't feel like it. Then I get my heat pad and sit with it to loosen my spine for driving, I listen to the radio for traffic news and plan my route to the easiest (the least stops and starts, plan where I will park, even if it means a short walk) then I heat the pad again and use it while driving. I have to check all my mirrors because depending on how tired my spine is, I can shrink an inch or two in the seat! All this can take 2 - 2.5 hours.
Most said they probably wouldn't go out much if that's what they had to do. I agreed with them because before cp I took things for granted too and would have thought exactly the same. But when it happens to you, you have to find ways to carry on.
It is hardest for those closest to us. They see changes and can't understand why one dway you were healthy and the next you are exhausted getting out of bed.
They are going through a mourning just as you yourself does. Unfortunately there is no set period for each stage and they will be at different stages too. It's a long journey to acceptance, I would have thought it would have been easier if they have been to appts.
Understanding them may help you. They were expecting a son who goes out in the world and makes a life for himself. Now all they can see is looking after you for the rest of their days. It's selfish but that's how it is.
As for friends, unless they have insight they will drift away. That's not that they don't like you anymore, its more about not being able to do the same things. Maybe suggest a night in with videos,xbox, beer, once a fortnight, stress how important their friendship is, how you value the times shared in the past, and the only thing that's changed in you is your illness. Then open up and tell them your feelings as much as you think they can cope with.
See how you and they feel about you getting a wheelchair so you can go out with them. See if they will try it once, all meet and choose something to go to, even the pub as a start point.
You may find though that you will still feel left out as they will be talking about things they've done together and have little in jokes you don't understand.
As for housework, don't stress, your parents expect too much from you. It is something that always needs done. Get strict with yourself. Decide how much you can realistically do before feeling exhausted. If that's only a few minutes that's ok. Then break your chores up over the week. Then break each day up into your minute sections, allow the same time for rest, with longer breaks every half or hour as you need. Don't worry if its too much, just alter the chart. You may find that some tasks don't make you tired and you could double up on them. Remember this is a living chart and you can change it to suit you. Streamlining too helps. Simple things like having a basket at top and bottom of stairs. Put things in that need to go up or down, then take one or two when you are going up or down, don'tmake an extra trip. Train your parents to do this too, as some of the things will be theirs.
From working like this, you will be able to find a comfortable level of work. And the more of a routine you get and your body is comfortable with it, you may be able to chip the odd minute off your rest time, spread them out during the day. So eventually you will be doing more. It's tedious and frustrating, but think of it as training your body like a marathon runner, they don't wake up one morning and run 26 miles, they train over years.
It may make you more tired in the beginning, but don't give up, just give yourself less tasks a day. Also work out the easiest and quickest way to do something, like cleaning the bathroom, do one thing at a time, it may take you 4 hrs to do something thast would normally take 20 mins. So have a long break when you are finished and reward hourself. It can be anything you like doing but stick to the half hour. By dotting nice things in your day, will make the tasks seem less of a chore. And the quicker you get at doing things, the more nice things you can fit into your day. These are things that really make you happy, not switching on the telly because there is nothing else to do.
It can be done, I trained my body to sit and work a sewing machine starting with 5min sessions just using the pedal. Took me 3 months to get to sitying and using for 50 mins. Although I tend to do in half hour bursts. I still reward myself when I finish a job. This is my work now.
There are plenty free on line courses you can do to help self esteem, they ask questions of you that maybe you never thought about. And even if thjis is not a problem for you, by learning about yourself you can then learn about others, and learn strategies to help them understand. The OU does plenty of short courses and they are very helpful with disability and illness, they can often make special arrangements for you to do an exam, or choose courses that just need a project doing. You csn study when you are resting, and your parents may expect less housework if you are doing something positive. There is a lot of tutor support on your first course with the OU. Their courses are structured so you can either do specific ones for a specific named degree, or just do what takes your fancy for an un named degree. There are many 2 year courses that give diplomas, and you don't have to do them in 2 years. You can do them on line too and you will meet (virtually) people with the same interests as you. Often this develops into a physical meeting, and longterm friendship. They will include you in activities long after the end of the course.
Sometimes friendships die anyway. My daughter has left school to do her highers (a levels) at college. She still meets up with her friends who stayed at school, but compared to college where the age range is 17 - 35, she's finding them very immmature squabbling over boys that just aren't interested in them, falling out because one bought the same make up as another, no interests other than themselves, etc. She now has new friends who fit better with her and share her aspirations of going to uni.
You know the saying, when one door shuts another opens, well go see whats behind it, and work out a way to grab it. Stephen Hawkins didn't give up when he wasn't diagnosed, nor did his parents interveen when they were told he only had 2 years to live aged 19, now look at him and what he has discovered and shared with the world!!!
Pain is a personal illness that is highly underrated by those who've not experienced it and that goes for so called health care professionals as well, I suffer from OA and chronic neuropathic pain syndrome this is the worst of it and the most elusive and nasty of all the pain issues I have its also the most untreatable but its not like any other pain I've ever experienced, people who are still friends (some are not now due to their hostility towards me) with me don't fully appreciate how it feels and what it does to me, after several years or trying to convey what its like I've given up trying, its not their fault its just how it goes, in the end one thing the illness has done for you is its shown you who is worthy of being a true friend, and as others have said as one door closes another opens, I've got some very good and understanding friends I've met on line, all have pain problems so have a high level of empathy towards others like us, were an odd band of outcasts who are tougher than many, I'm sure if most people had just a whiff of what we have to deal with on a daily basis many wouldn't manage to survive more than a day or so, as the old saying goes what doesn't kill you makes you stronger, so try if you can to learn from it , and don't worry what others think of you, your a lot tougher than they. its also good to try and find a coping strategy, for me I try and deal with it a day at a time, if I stop and think about it to much it can get me down so I take each day as it comes now, when things are good try and do something with the time when its bad rest up and conserve your energy for the good times, after all there's always sunshine after the rain so to speak.
Fear of what the future holds - mainly for You but for themselves as well.
Someone has previously mentioned that they are having to mentally adjust their expectations for your future, like, - is this it for you? What if your condition deteriorates? Who will look after you if anything happens to them? Who will look after them if one or both of them develops any debilitating conditions? Will you ever marry, have children, be happy or successful in some way? They've probably subconsciously thought about some or all of these issues - quite understandably.
What they are probably hoping for is some form of re-assurance from you.
Before communication breaks down between all three of you, may I suggest that you try to sit down with them and discuss how you are hoping to cope with your condition going forward. Some excellent suggestions have already been made in terms of goal setting and aspirations. What worked for me was coming across 'The Spoon Theory' which you can find on the following website - butyoudontlooksick.com.
If face to face discussions don't have the desired effect, another suggestion is to write them each a letter, some things can be expressed more clearly in writing - not pointing out how let down you feel by them but expressing your gratitude for all they have done and continue to do for you. Acknowledging their concerns (if you know of any - you could also hypothesise, which is what most of us do), What progress you are hoping to make in your life going forward and what changes you'd like to see at home both for yourself and them.
Do let us know how you get on - we're all rooting for you. Remember, you're not alone.
I have just joined this support also,I understand you 100%.I am sorry for your continued pain of fb..it's a lonely place to be for sure.I like you am in the same situation.I have Lupus,have has two brain tumors removed,and now an inoperable brain stem brain tumor that causes so much pain I can't bear it much longer.Some of my family gets it but some members just act like they don't want to educate themselves on my diseases,pain,or symptoms that I have on a daily basis.I don't want sympathy but do want understanding.I have a wonderful spouse of 44 yrs,but even he asks me some strange questions,and will not talk with me about my health. As I said it's a lonely place to be.I have good and bad days,I take advantage of the good days,and have to be down on my bad days.I would say if most ppl were in my shoes they wouldn't be up at all.All we can do is our best hon.Do what you can for your depression as pain causes a lot of that.Do things for you.When its an invisible disease ppl have a harder time understanding it.When my head had staples from temple to temple ppl were so understanding because the staples were a reminder,now that my brain tumor is inoperable ppl seem to hide more.Its either they just cant handle it,don't know what to say,or are just to busy in their own lives to care.Older parents don't seem to understand the newer terms like fb,or your Father is scared why don't you just ask him what the real issue is with him,and the way he views your sickness?My thoughts and positive energy comes your way.Try to look at everything as positive as you can.I have to look at what I can do for as sick as I am instead of what I can't do.I write in a journal everyday it helps get my feelings out,and keeps me positive as possible. I have a section for what I am grateful for,its a good reminder to me that I could be worse.Good luck,maybe a support group at a clinic would help you also....take care and smile.....as much as you can....
I have just joined this group today.After five years,many many tests and a lot of ' it's psychosymptomatic' from doctors I was diagnosed with M.E/Chronic Fatigue Syndrome.
I have only just started attending a rehabilitation specialist,but it's so hard to change your life to how they 'supposedly' think would be better for you.
The trouble I have is with knowing my limits,because the pain from activities that are too strenuous don't appear until 24 hours or so after,At the time you think 'I can do this'.
People don't know what you're going through because they can't 'see' your pain.They don't know what it's like to have to get yourself through each day,to put on a brave front for your family,and carry on and do things a mother and wife should be doing.
The good days have been fewer and fewer lately,the painkillers aren't as effective as they used to be.Ive always been so able and now I just feel weak and useless at times,which then makes you slip into depression.
I don't want to let this beat me but it just feels like a losing battle sometimes.
I don't want my kids to grow up and just remember mum being sick all the time.
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Don't understand my doctor
Undiagnosed and feel like no one is listening 
Getting it right for every one at the Doctor's Surgery.
Does any one suffer with MS on here?
