Family/friends reaction to fibro/cfs

[diamond]

How do any of you feel when/if you are told or treated in subtle ways like you basically are over reacting...exaggerating....don't try hard enough....are letting your loved ones down when you are always pushing and doing your best.

Or told in a critical tone you talk about your condition too much..... say because a flare means you can't do something or it's so painful you need to rest and explain why.

From my point of view the odd comforting words or maybe a bit of positivity/support when you are feeling down and out would mean the world and give hope...not sympathy just someone on your team so to speak rather than against you.

Or even because you have to find a way to say you need to make your way home now after a while out because the pain/weakness is building too much...how do you do it and what response do you guys get?

Anyone experience a little or a lot of this kind of thing?

 

[Lou38]

My family have been pretty understanding. My girls aged 10 & 12 most days push me to the limit in terms of being completely unhelpful, & making life even more difficult for me. My husband hasn't been a great support, I'm going through a really bad flare just now & can hardly put one foot in front of the other & I have had no support at all from him. He's going through his own stuff too but that doesn't make it any easier to deal with. In terms of nights out, I very rarely go & I'm always one of the first ones to leave. Everyone just expects that of me now & never really questions it. This probably sounds a bit pathetic but it really gets to me on the rare nights out I go on that I can't even wear 'nice' shoes because of bunions, collapsed arches & unstable ankles. I know that's only a small thing but it gets to me. Also on a night out I really struggle to hear anyone speaking over the top of music which makes me feel even more isolated. Sorry that turned into a rant lol. How do you find people are around you diamond?

I have to say, most people react in the way like what is wrong with you now, not necessarily in a bad way but it makes me even less likely to say if I'm struggling as I feel like a hypochondriac.

 

[diamond]

My experiences haven't been good which is why i raised the thread and wondered if others take things to heart.

oh actually i didn't necessarily mean nights out...i meant going out maybe for a while in the day time but say you needed to say to your girls or hubby i hurt too much now i HAVE to go home ..cant take another step or im going to be in bed or on the couch unable to move..or even stuck in bed for days.

I know fibro affects everyone differently so maybe i have made that assumption wrongly that people can't stay out of the house for too long.

Sorry Lou i recall now that you do work i think so it must be very hard with a family to find energy and pain levels low enough for leisure activities day or night.

I also dislike i cant wear nice shoes or boots anymore...not that ive been out for ages but i have to wear flats with thick spongy soles for protection ...joys of fibro!

Hope your flare passes soon x

 

[vickythecat]

This is a topic I have been analyzing, going over it again and again and coming up with theories for a while now. Because just like you, I've had many days, moments with hurtful comments from those people who are supposed to know how much I suffer.

This is the one theory that I try to accept;

For a completely healthy person, who only feels pain and tiredness with a clear reason (injury, short illness like flu, physical activity, sleepless nights etc), it is almost impossible to fathom how we, either on the extreme end or the not so extreme end of the spectrum of fibro, feel on a daily basis and for such a long time. Non stop.

They know, when they are in pain or are in tired, it will go away. This is a very important point because I believe it is the cause of all the misunderstandings, of all the 'come on, you can do it', 'I am also tired at times', 'you have to try harder' like comments we get from our loved ones and from the healthy world around us.

So they simply do not understand, and/or might never understand.

I decided to accept this and talk very little about my suffering. What I do is, tell them in concrete words how I am in a particular moment/day; 'I am in pain, I will be in bed all day', 'I am feeling too tired right now, so I will stay here and rest. Please have a great time outside for me', 'I had a very painful night and will need more hours and more rest than usual to feel human today'.

I don't know whether it is these concrete sentences, but these past few months, I have noticed that both my mom and sister are becoming more and more understanding towards me. They'll even make my bed up for me, or will bring me herbal tea when they notice it is particularly a bad day, buy me treats etc. We are not a family who talk a lot about health issues (for example, no one has ever accompanied me to a doctor's appointment, it is not what we do in our family), so I am not expecting a lot from them as well.

But by not talking about it a lot, I also do not have to face the usual comments we are used to getting as much. But whether those comments will ever end...I sadly doubt it.

It is why this forum has taken a very important part in my life. This is where I come to talk about my suffering.

So vent away here I say, we are here for you (most of the time, I find just writing it down is half the therapy.)

 

[Karen44]

Hello All,
Before I was diagnosed but feeling bad and seeing doctor after doctor with no help, my sister would say things like, "Oh, I have that, too. It is just a part of getting older. You think about it too much.." When I would Google symptoms I'd be told "you dwell on this, you need to stop Googling.". (I continued to Google!). She did, however go to the doctor appointments with me and heard doctor after doctor say, "Sorry, I can't find anything.". Since my diagnosis she has stopped going to the doctor with me. She does help me do some things around the house and I have hired someone to clean every 2 weeks so I won't feel so guilty.

 

[lyrin]

Prior to diagnosis it was a major factor in the end of my last relationship. I have a very real back problem which I was told was "an excuse" I'd used "long enough".I didn't know about fibro but outside of work I couldn't do much. He wanted a house that looked like a magazine and all I knew is I couldn't do that. He yelled at me and belittled me one too many times and I left.

Otherwise my biological family and I (angrily) parted ways when my mother died. She was the only good person among the whole lot. I had been living with her at the time. I was told, by my father, I would be shot and killed while holding my 6 month old son. I said "See you in hell" and off I went.

One person I know has fibro and another knows it and has many health problems. (A lady I used to work with and my Godmother who was my mothers best friend) They were very supportive. My few friends have also been supportive. Even my boss upon being told my diagnosis said "Well if you need anything contact HR and I'll approve it". Same thing he said when I was potentially having back surgery (which is back on the table, seeking a 2nd opinion). As long as I do my job I could have 2 heads and work would be fine. They've actually shown concern that I was even taking on too much for a normal person. I assured them I was fine but told they "cannot afford" to have me have a breakdown. I'm *really* lucky to work there.

I have had... similar experience with my bipolar though. The "try harder", "suck it up", "it's all in your head", etc. I never let it get to me. If I got angry over ignorance it would take up every minute of every day. I don't have time for that.

 

[Brenda K]

Diamond
I struggle with this. My best friend will complain one day that she has a sore back or didn't sleep. I always show empathy as I know what that is like. Now flip the picture and it's me complaining about how sore I am or how I haven't had sleep in days, only to get yeah we all go through that, There is not a bone of empathy in her body, but I have always known this. So the one person I should be able to talk to about this, I can't and I find that very frustrating. I don't think she understands what this is like at all, and I am not going to beat my head against a wall to make her understand. It is what it is. She is my best friend in every other aspect, but when it comes to my pain, she just shuts down or changes the subject.
My father always called me lazy and that it couldn't be that bad and I was exaggerating, he ended up getting bone cancer and dying from it. I do not know the pain he was in as everyone's is different, but before he passed, he apologized to me because he had never had pain like that at all ever and didn't know how I managed to get through it. That was hard, because he was always so strong and to see him suffer was heartbreaking.
Like I said in another post. I have learned when people ask how I am, they do not want to know. They just want to hear fine so that they can talk about themselves and their petty lives.
Oh and the. Ohhhhh it must be so nice to not have to work! Like a permanent vacation. Yeah. Right. Because I love being isolated and living in so much pain that most days I wish I were dead. Yeah it's awesome
I loved my job, tried to return to work three times, each time was worse than the first. Having to give up my work almost broke me mentally, but no one gets that except for the unlucky few that have been through it themselves.

I have just stopped going out. I run into the city when I feel good enough to get groceries etc. But other than that I do not go out. It's sad really. I used to have lots of friends, and loved going out.
Now I just feel inconsequential. I have no life, therefore have nothing of value to add to a conversation, and somehow sitting around with all the married couples, being the only single one and listening to them go on about their cabins and vacations and social life, makes me feel like I just don't belong anywhere anymore.
Fibro has robbed me of many many things. It's so hard not to be bitter.

 

[diamond]

Thank you all for taking the trouble to share your stories and points of view.

I wish i had known some of you way back so i could maybe learn to toughen up a little to the responses ive had from my family or have shared my feelings at low times with people who do understand the losses and emotions we face.

I'm not good at taking knock backs these days......in my less severe fibro years i could always bounce back and had an inner resilience that often seems to elude me now.

Too much time now alone without ability to keep active and my self esteem high which for me and many i suspect is the biggest tool to keeping any negatives in life in perspective.

It's nice to get to know you all a little better I appreciate your openness.

 

[Tipnatee N]

I'm living in the world that attacking every parts of me. So it's naturally to living and looking like a very eccentric person. Cause on top of my pains, I'm also living in diffrent time line than most people too. living in Non-24 hours is like living in back to the future.

This passed weekend if I could sleep then I usually fallen as sleep between 2-3 pm then wake up around 6pm-11pm. Then early this week it will automatically change to going sleep from early evening 4-6 pm and wake up after midnight. Then later on by the end of this week my sleep schedule should finally fallen in to the normal people time , which mean in each month I can only associating with normal human being who live in 24hours clock just twice a month. :sad: Each time last a few days then the rest of the month there's no plan I could make at normal human hours.

There's the time when I can hardly see the sun ever. Not that I can live under it any longer nor look at at it's glare do to my sensitive eyes. I lost my calendar count cause it difficult to recognize the dates and time. So who can live with a person like that? Not many. They either always see me dead sleep or always wide awake, always in pains, and always tired . The reaction from other people are so very condescending I have to tune them off from my ears completely. Because I can no longer allow my self to weep and cry do to my MDD. I can no longer get aggravatingly angry else I'll either pass out, or stuck in the bad anxiety's loop. I can no longer dwell on any negativities thoughts or I'll be pulling by the spiral flareup and panic/hyperventilating attacks loop.

I can't tell you all the things that I've know of people think or said about me up to now cause I try not to picturing them in my head cause it will make me feel sick.

I have to live like a statue of liberty. Stand there and take the weathers!!

 

[Lubkos way]

I hope you all can learn to live with the disappointments that those you care about have caused.I have also had painful experiences with family members which ended regretfully,but they had to.

On the day of my father's funeral,after the wake my twin who stayed with me for a week had the nerve to tell me he was a better man because he earned more than a 100K a year!Meanwhile he bullied his way into my house and was a slob,too cheap to get a room.


I threw him out and have not spoken since.I will never see him again.My twin!!


Take the garbage and throw it out!Period!Move on and you are better off without the creeps,who ever they are!!

 

[Tipnatee N]

lol Lubkos way , I hear you.

I threw out alot along the way. Some still guilty cause I should have would have could have. But my mind and body said I'll deal with it late when the times comes. What necessary to keep is another matter though.

 

[lyrin]

As was suggested to me in another thread keep your stress levels down. Do NOT let these people get to you. They could end up making things worse for you. That philosophy applies to all of us, really.

(Hope I don't get myself in trouble here) But there are still people who believe the earth is flat. You cannot change their minds no matter what evidence you give them.

Sometimes you can't change someones opinion for anything. As long as you know and your healthcare providers know that's whats important.

 

[Tipnatee N]

lol earth is flat . I guess at this point I might as well living out in space cause I think I got kicked out from that flat earth a while ago. :mrgreen:

It's not easy is it to ignore everyone that passing or surounding in our life? We tell our self not to let it bother us evertime it happen, we recognize the sign before so we keep telling out self to stay claim and let it pass or let it go , and we push everyone that stress us out to no end out of our way just to survive.

But I wonder how far do we have to go about it just to find the perfect peace of mind? I'm already agoraphobic, should I go completely off the grid? :shock: . I believe that composting toilet is still not something that I would prefer.

Even normal people have a hard time dealing with it just to keep living in society. I wonder is there a guarantee way to ease our mind and still living peacefully side by side with them? How exactly do we keep our self from being effecting by stress while living with fibro without having to abandoning our humanity along the way? Although I said that I stop caring , It's still hard to completely not caring.

Meditation ? I get stress by the thoughts of constant blank minded.

I envy sociopathic mind at the moment. Maybe I should act more like an observer , not getting involving with anything just collecting informations to see what maybe useful to me . Perhaps it would be best to keep my head phone on and pretent to be busy watching/listening to something else, or having a fake phone call . How about fake fibro fog, that might comes in handy someday. :lol:

 

[diamond]

Oh Tipnetee you make me laugh soo much! For some reason your humour and way you explain often tickles me even though really sometimes i could cry with pain at the time and i'm on the forum trying to distract myself.

I cant tell you the amusing images your posts conjures up in my head!

 

[Craftylady]

I'm so lucky to have a very supportive husband and kids. I know some of my grandkids dont fully get it. Im no longer able to do much fun stuff with them and I've been told they're no longer keen to visit for the holidays as it's too boring. That is a real grief to me but I have a chance to redeem myselfthis summer. I'm going to plan a few small fun things that I can do and hubby will take them on outings on the other days so I can rest.
Im on a disability pension and dh is my carer, my two sis-in-laws reactions was sort of derisive and well if you can convince the government to give you money good on you. One SIL came to me later and apologised saying that there was nothing funny about being in pain, so that was nice.
I know I am very fortunate to have so much support from so much of my family, I don't know how you others stay sane without it.