I am a recently diagnosed man and frustrated with my family's understanding

[inotazo]

Thank you for great advice, Sunkacola, Jemina, Creola17, Warbucks, Marvis!
I try to communicate about my situation with wife and family(-in-law) based on your acvice. Now I have a huge debate with my wife regarding something close to whar Marvis said:

It might be that she feels she’s ‘gently pushing’ you towards recovery and not giving up and not understanding that she’s making you more ill. She may be afraid that she is losing you and acting out of fear, not realizing that she is pushing you away emotionally and sending you further into a spiral of ill-health.

My wife (and sometimes family-in-law) compares the pre-fibro me and current me, saying like, "Even though you were extremely busy, you were totally fine and lively, why did you become like that?" and "I want back the previous you." This sounds denying the current me and even my current existence. Even if I tell so and ask her to stop saying something comparing to the past to my wife directly, she just says, "I just want you to get better," "Oh, it's a way of tough love." But, saying something like that definetely hurts me (not just feeling, also causing more fibro pains!). I don't like it. I just want her to look at the current me, who try hard to get better, and the future me, who will be even better than the past pre-fibro me. Being cooperative with my wife is not straightforward.

 

[Jemima]

Thank you for great advice, Sunkacola, Jemina, Creola17, Warbucks, Marvis!
I try to communicate about my situation with wife and family(-in-law) based on your acvice. Now I have a huge debate with my wife regarding something close to whar Marvis said:


My wife (and sometimes family-in-law) compares the pre-fibro me and current me, saying like, "Even though you were extremely busy, you were totally fine and lively, why did you become like that?" and "I want back the previous you." This sounds denying the current me and even my current existence. Even if I tell so and ask her to stop saying something comparing to the past to my wife directly, she just says, "I just want you to get better," "Oh, it's a way of tough love." But, saying something like that definetely hurts me (not just feeling, also causing more fibro pains!). I don't like it. I just want her to look at the current me, who try hard to get better, and the future me, who will be even better than the past pre-fibro me. Being cooperative with my wife is not straightforward.

It sounds like you're doing so well in confronting this. I'm so sorry it's such a challenge to navigate, and for all the emotional burden that comes with that.

I think the best thing that you can do is try to make it clear that you have been diagnosed with an incurable condition - it is a condition from which people don't recover. There is management, but a big part of managing fibro means pacing and reducing stress - the things that they are simply not letting you do. Crucially, fibromyalgia does not respond well to tough love - trying to push through it will inevitably and unfailingly make it worse, and that's something we can't get around. By not grasping this, they are actively making you sicker.

Everyone diagnosed with fibromyalgia has to go through a grieving process, letting go of a number of things that they used to take for granted, and the same can be said for our loved ones. But your family need to accept this new status quo, just as you had to, because nothing they do is going to wind the clock back. However, if they support you 100% in your judgement calls each day (and in making those calls, you're proactively learning how to manage your condition) they might just be able to help you bring your symptoms down a little. It might be worth focusing in your discussion on the fact that you've had to come to terms with this being your new reality - and that's been really hard - so they need to stop knocking you backwards.

Perhaps it's also worth sharing the anecdote of someone you've been taking to online. My partner is totally on board with my condition now. It took him a while to understand -not for a lack of willing, but because he couldn't see what I feel, and we're all so used to the idea that illness is temporary - but now he just supports my assessment of what I need each day, and he's learned the value of that, because he's seen that doing it helps me actually do better. If they can do that for you, they will probably witness the same. Time to stop pushing!

Finally, you might find it useful to point out that while it is hard for all of you that you're going to have to navigate this condition ongoing, at least it isn't something progressive. You could have MS or ALS, or any number of other things that would get progressively worse over time, but you don't. They aren't going to lose you - they just have to embrace the idea that the practicalities of your life have changed. It takes some adjustment, but it can be done!

Sending so much strength, and wishing you luck in your next conversation

 

[Auriel]

I’m soooo sorry your going through this @inotazo, it does sound like your doing everything you can to help yourself and still trying and doing what you can, coming from a family with “issues” I completely understand with the assumption that your ok and everything’s ok, if you need your walker ( which you do) then use it, it’s really good you can work from home, some people just don’t understand the daily struggle fibro/cfs can bring, there is a fibro forum for men but there are men on this forum too (I kind of like the mix of both on here) either way hope your well (as well as you can be with this)
🌦 🌬🌦

 

[Auriel]

Morning @Jemima!, ahh another member with a family lack of understand (makes me sad) anyway hope your ok and the darker months aren’t getting you too down

 

[Jemima]

Morning @Jemima!, ahh another member with a family lack of understand (makes me sad) anyway hope your ok and the darker months aren’t getting you too down

I'm hanging in! Sore as hell this past week, which is very frustrating, but keeping my eyes on the prize = I am a bouncy ball, and in my world, what falls down, must bounce back up!

 

[Auriel]

Your so funny I’m same today I’m hurting bad (dunno why) like you said we have to keep bouncing it’s the only way

 

[sunkacola]

Thank you for great advice, Sunkacola, Jemina, Creola17, Warbucks, Marvis!
I try to communicate about my situation with wife and family(-in-law) based on your acvice. Now I have a huge debate with my wife regarding something close to whar Marvis said:


My wife (and sometimes family-in-law) compares the pre-fibro me and current me, saying like, "Even though you were extremely busy, you were totally fine and lively, why did you become like that?" and "I want back the previous you." This sounds denying the current me and even my current existence. Even if I tell so and ask her to stop saying something comparing to the past to my wife directly, she just says, "I just want you to get better," "Oh, it's a way of tough love." But, saying something like that definetely hurts me (not just feeling, also causing more fibro pains!). I don't like it. I just want her to look at the current me, who try hard to get better, and the future me, who will be even better than the past pre-fibro me. Being cooperative with my wife is not straightforward.

Jemima is right on with what she said in response to this.
I think it's natural that everyone wants "the old you back again". But i guess the thing you need to impress on them is that the old you is gone, and is not coming back. As Jemima says, you have a condition for which there is no known cure. This is a fact.

Point out to her (them) that this is a permanent change, out of your control, just as it would be if you lost a limb or became paralyzed. You can learn to manage it to the fullest, but you cannot change back to who you were before. What they are doing is like saying to someone with no use of their legs that they want that person to go running with them again, right now, and asking that question repeatedly every day. Surely no one would do that. It would be so mean and unreasonable. But what they are doing is the same thing. this is NOT "tough love". that only applies in cases when the person actually can choose to be different right now, which is not the situation here. What she and her family are doing is harassment and unkindness.

Of course everyone, including you, wants the old you back. Explain to them that if they keep reminding you of how things used to be, when you are unable to be that person any longer, is depressing, frustrating, and stressful for you. Tell them that you want the "old you" back too, but you can't make that happen and to be forced by them to dwell on it constitutes a huge hindrance in your day to day life.

Ask them to do what you have no choice but to do: accept what is. Acceptance doesn't mean approval or apathy or acquiescence or anything like that. It does mean not constantly saying that you want things to be different, go back to as it was before, not be happening. Those things, as you know, are only going to hurt you. Maybe if you put it to them like that it will help.

I wish I were there. I have had some mediation experience and I would go talk to them with you. I think they will come around in time, but I am sorry that you are having to continue to deal with this.

Also, maybe point out that you are being asked every day to be very patient with them while they say these hurtful things to you, and that you'd appreciate it if they would try having patience with you.

 

[wiserlady]

I feel really sorry for you. You may have all of these problems and brain fog but that does not mean that you are not intelligent and logical, understand your situation well and can make wise decisions. You and only you know how tired or work out you are. Maybe a walker is a good idea for some, does not mean it is for you, and I am sure you would realise it yourself if it was without needing others to chip in with suggestions. If you broke your wrist and had it bandaged until it repaired they would be offering to help you by doing things for you and showing a lot of sympathy. Even though a broken wrist is far easier to cope with. They just do not understand and do not listen to you. So of course you get angry and frustrated, who would not? I hope you are feeling better now.

 

[wiserlady]

My partner often says things like he wishes I was the same as before, he wishes I could take the dog for a walk and so on. It always sounds as if he thinks it is somehow my fault I have changed and am not able to now. As if it is a choice, or I did something wrong to cause it.
But these people really just mean what they say and perhaps we get too touchy, after all we are burdened with it. I have often said to my partner that he is mad to stay with me, if he had any sense he would go, start a new life with a woman who has not got this problem. Because here with me is not much of a life. He used to be very keen on travelling, but he would rather be here with me than go on his own. He used to e able to relax, but now he has to do all of the housework and chores. Not much fun for him.

 

[sunkacola]

My partner often says things like he wishes I was the same as before, he wishes I could take the dog for a walk and so on. It always sounds as if he thinks it is somehow my fault I have changed and am not able to now. As if it is a choice, or I did something wrong to cause it.
But these people really just mean what they say and perhaps we get too touchy, after all we are burdened with it. I have often said to my partner that he is mad to stay with me, if he had any sense he would go, start a new life with a woman who has not got this problem. Because here with me is not much of a life. He used to be very keen on travelling, but he would rather be here with me than go on his own. He used to e able to relax, but now he has to do all of the housework and chores. Not much fun for him.

You might just try responding with "Gee, I wish I were the same, too. but I am not, and there's not much point in repeating this."

I want to give you a bit of encouragement on what you are saying.
Having FM doesn't mean the end of fun. Or the end of travel, or the end of doing anything that you really want to do! It does mean that with some things you will have to modify your expectations or plans, find a different way to achieve what you want, or figure out what it is about doing that thing that you really want to get, and see if there isn't another way to do it.

Lots of people who have difficulties or physical disabilities go travelling. Even when they are in wheelchairs, and I know of a few who have even done so while on oxygen. Where there is a will there is, 99% of the time, a way.

If you simply do not want to, that is different. but if you do, then focus on finding ways to do what you want.

If you wanted to take an 8 day horseback tour in Iceland (just to pull something out of my hat), and now you feel (reasonably) that you cannot, then analyze the whole thing. Is the main thing that you want to see Iceland? Or is it that you want to ride a horse? Or is it that you want to ride a horse in Iceland specifically? You can find a way of doing any of these things without it being the whole 8 days on horseback. Maybe a bus tour with one hour spent riding in a beautiful place. Or just the bus tour. Or go riding at home without the Iceland trip. Or whatever.

I have found that if I accept the idea that I need to come at things a different way, there are actually very few things I cannot do if I really set my heart on it.
I really wanted, for instance, to hike up the Inca Trail to Machu Picchu. But I know better than to ask that of my body a this point in time, because my gut kept telling me it wasn't a great idea. However, what I realized I really wanted to do was 1) see Machu Picchu and 2) go hiking in the Andes. So I found a different tour that would take a different route up there. It will be easier and I will still get my hiking-in-the-Andes, and still see Machu Picchu.

And also keep in mind, Wiserlady, that if you work on yourself and your body a little bit every day and build on that you can have some amazing success at alleviating some of the symptoms, and get enough better to be able to do things that you maybe can't do now. Nothing is static - everything changes all the time, especially our bodies, and if you are working on it every day those changes will be positive ones. Just do not ever give up and think that you can't.

 

[wiserlady]

I agree with you. You should build on your body, also your mental health, emotions and knowledge. It's what has led to my business success over the years. We cannot help becoming older but we can improve how we think and feel and what comes of it. A lot of my clients have been with me for many years and I only take on clients who have this open minded ness and are willing to invest in themselves rather than just look for sympathy or help from others or be fatalistic about it all just sitting and waiting for luck to help.

My partner was recently diagnosed with a heart condition. It was the end of the world at the time as he had to totally stop working. And he had to lose all of his income. But the worst thing for him was not being able to be physically active. The first thing to do is keep a level head. Not get all down and worried. The next is to see the good in what is left of your life. The third is finding a way to make things better. He is now fine.

 

[wiserlady]

Of course, one of the problems you get is that your family etc are telling you how to feel, how to behave and what to say etc. You come here to have a rant about it - and who can blame you - and at least one of the people who read your post and respond to you say do this and do that the same as your family do. You want people to acknowledge that you know how you feel, what you can and cannot do, and do not need advice!

 

[JayCS]

Of course, one of the problems you get is that your family etc are telling you how to feel, how to behave and what to say etc. You come here to have a rant about it - and who can blame you - and at least one of the people who read your post and respond to you say do this and do that the same as your family do. You want people to acknowledge that you know how you feel, what you can and cannot do, and do not need advice!

Yeah, we do need to be careful about that, when ranting and when answering. So it's clearest to go to our "moan, complain and vent"-forum to rant. Even easier to end with a short note if advice is wished for or not, like inotazo did in his first post "Does anyone have any idea about resolving this kind of situation?". And if neither, for answerers to express their empathy, but also uncertainty if ideas are wished for. Actually tho, it's only extremely seldom that someone didn't want advice, even if they didn't say so... In that case they can just add it, and everyone will understand.
Also: Our advice is meant to strengthen, to develop and catalyze the own ideas of a person, and it is also very seldom that someone goes a bit over the top and pushes the advice. And even if they do/did, our pushing is of course nothing like the pushes of someone living with you in real life, with stuff like emotional blackmail or getting personal or psychologizing, it is rather strengthening, giving hope, giving new perspectives, new insights.
It reminds me of two things: The fact that in relationships there is often one partner who tends more to want to just rant about something, but not - yet - a solution. John Gray would say Mars, rather than Venus. However I'm almost always the Venus, my partners were Mars's (sp? ), but when it comes to advice I always want to give and take, so have to bite on my lip.
The other is the way some people say that going to counsellors/therapists is mainly to get something off your chest. With that I thoroughly disagree: if someone needs help, then getting it off your chest is only about 10% of the game.

 

[sunkacola]

Of course, one of the problems you get is that your family etc are telling you how to feel, how to behave and what to say etc. You come here to have a rant about it - and who can blame you - and at least one of the people who read your post and respond to you say do this and do that the same as your family do. You want people to acknowledge that you know how you feel, what you can and cannot do, and do not need advice!

I don't think anyone here is telling anyone else what to do. Just making suggestions.
But...............
We re here to help. that is the whole point of the forum.
So, my inclination is to try to help if someone seems to have a problem.

If a person just wants to rant and rave, we have a special section for that. Although, most people who post a rant there are open to suggestions as well.

And it is even a good idea to say in the post "just ranting, I don't really need or want advice". Otherwise, those of us who come here every day and often spend a lot of time dedicated to trying to help people will feel that we can try to help.

As JayCS says, it is very rare for someone to post about a problem and not want any helpful response, without including a sentence explaining that they don't want any advice. And when someone does include that, we don't offer advice.

 

[JayCS]

Otherwise, those of us who come here every day and often spend a lot of time dedicated to trying to help people will feel that we can try to help.

Very good point!