Help Explaining to family :(

AUDREY DARLING

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Aug 26, 2022
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Hey guys, I have been diagnosed for a year and a half and have been experiencing symptoms for two and a half years. Before my diagnosis, I was very lively and outdoorsy and could barely sit still. When I started experiencing symptoms, my B12 was deficient (the nervous system supplement was so low that my nerves were getting eaten away to make up for that vitamin). As a result, I napped all the time and I mean ALL the time. Now that I am getting back in the groove of things, my parents are not understanding that I need a break. My parents, especially my dad, think that just because all my other test results are normal means I should be able to do everything I used to do, but I just can't. They think I am lazy and ungrateful for trying to get out of things. It is just really frustrating because I just can't keep up with them all the time.

[Our last vacation was at Disney World. We walked upward of 13 miles a day and stood in lines all the meanwhile. Our schedule went something like this, up at 6:30 am, a quick breakfast, bus to the park, eat anywhere from 11 am- 2:30 pm, eat dinner around 6:30-9 pm, and then at the end of the day when the park closed we would go back and possibly swim and then shower; therefore, ending the day just past midnight. We did this schedule for ten days.]

I know I sound really ungrateful, but I can't keep doing this anymore. Trying to keep up with their routine destroys my body for the next couple of weeks. I really need help explaining to my family my illness. (preferably a way that my stubborn parents will understand, without blowing up because they're offended).

Thanks so much in advance <33333 Any advice is appreciated!!!!!
 

sunkacola

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Hi Audrey, and welcome to the forum.

You don't sound ungrateful to me, but just someone who is having a hard time communicating with family and that is one of the most common problems in the world! Not to mention if you have chronic pain and they do not.

My favorite analogy is the battery. People who do not have fibromyalgia or some other similar syndrome like ME, don't have good strong batteries like other people. A normal person...the way you used to be....can go all day and then at night their "battery" of energy gets replenished. But if the battery (in anything....a car, a phone you name it) is defective in some way, it won't take a full charge any more and consequently it runs out of power much sooner than it would if it had a full charge. That is what we experience with Fibro. And we cannot fix or replace the battery.

Sometimes explaining it like this gets through to people. But not always, and if your family don't want to accept it, they won't. If that is the case, all you can do is ask them not to criticize you because that will only make it worse. You can say to them (I have said this to someone), "I don't ask you to help me or to try to make things better for me. All I ask is that you not do things that make me feel even worse than I already do, and criticizing me does that."

I also recommend you check out this post I wrote about things you can do to help yourself to feel better, and start doing some of them. If your parents can see that you are doing your best to take action in managing your health and trying to feel better, that also might help. But of course, do it for you, not for them.

We are here to support you all the way.
 

JayCS

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Hi Audrey, and welcome from me too!

Click here for a thread (called How to Understand someone with Chronic Pain) we've made precisely for this aim, collecting together all kinds of strategies, analogies, pictures/memes and links incl. to a few recent threads with various constellations of families etc....
 

sweetkamie20

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May 16, 2022
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460
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DX FIBRO
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02/2022
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My parents, especially my dad, think that just because all my other test results are normal means I should be able to do everything I used to do, but I just can't. They think I am lazy and ungrateful for trying to get out of things. It is just really frustrating because I just can't keep up with them all the time.
Hi, Audrey, Sorry that you have another hurdle in addition to the fibro :(

I can tell you are eager to meet everyone's expectations which makes it especially sad that other people don't realize how much exhaustion and pain you have already endured for the sake of others. I am happy that you are not totally discouraged by the slowness of them coming to understand because I think a lot of us here had the same reactions from loved ones and then (some) of our loved ones came through. It's worth the effort to try for sure!

One of the things that helped me was asking others to read up on fibro themselves. I would choose some links for them to look at rather than sending them out into the worldwide web since the web has a lot of confusing/conflicting info (for instance, fibro is a psychological disorder-WRONG). My dad's a scientist so I sent him a medical research abstract. It was perfect because it explained that fibromyalgia appears to be a central nervous system issue and what goes wrong. My mom, on the other hand, is empathetic by nature and not judgmental so I think I sent a link to an article titled something like "20 descriptions of what fibromyalgia feels like".

Another idea is to have a parent attend your next doctor's appointment with you so the doctor can explain it directly to them and they can ask questions. You know how it goes - sometimes just hearing it from an "authority" figure makes all the difference. And then, what I always figured would work but haven't been successful at getting someone to look at it, is bring them here, to this forum, so they can read a whole bunch of people talking about their lives with fibro.

I don't want to discourage you at all but I want to throw it out there that you may not be successful convincing them soon enough. At some point, you will have to let them think what they choose because your body will demand it. When I kept pushing myself to keep up, I eventually landed in a 6 or 8-week flare which was so bad I could understand why someone may not want to live. When I explained that to my husband it caught his attention and from there he's tried to understand what I am going through.

The good news is that if you get to the point where you have to let them be disappointed in you and start saying no, you will find it gets easier to say no because your body and spirit will thank you. It's still hard for me to say no, but starting to say no has actually changed people's expectations and that has made saying no in the future much easier. I do NOT regret taking the gamble of disappointing people. It was scary but boy, I saw how worth it it was when I did!

Fibro sucks by itself but it sucks a lot more when you are stuck in a flare.

Welcome to the forum. Hope you feel like updating us on how everything is going :)

[Our last vacation was at Disney World. We walked upward of 13 miles a day and stood in lines all the meanwhile. Our schedule went something like this, up at 6:30 am, a quick breakfast, bus to the park, eat anywhere from 11 am- 2:30 pm, eat dinner around 6:30-9 pm, and then at the end of the day when the park closed we would go back and possibly swim and then shower; therefore, ending the day just past midnight. We did this schedule for ten days.]

I know I sound really ungrateful, but I can't keep doing this anymore. Trying to keep up with their routine destroys my body for the next couple of weeks. I really need help explaining to my family my illness. (preferably a way that my stubborn parents will understand, without blowing up because they're offended).

Thanks so much in advance <33333 Any advice is appreciated!!!!!
 

Rojo

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Jul 28, 2022
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5
I am very impressed that you were able to keep that schedule. After I was diagnosed the pain along with the mind boggling fatigue made it difficult to walk a block. Have your dad watch the YouTube videos. He will hear your words from other people. Take good care of yourself
 

Dot9000

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May 17, 2016
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06/1994
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The good news is that if you get to the point where you have to let them be disappointed in you and start saying no, you will find it gets easier to say no because your body and spirit will thank you. It's still hard for me to say no, but starting to say no has actually changed people's expectations and that has made saying no in the future much easier. I do NOT regret taking the gamble of disappointing people. It was scary but boy, I saw how worth it it was when I did!
Spot on! Think of it like teaching a child their ABC's. You need to use repetition and eventually they will understand. It doesn't matter what they think (although when it's a parent, it can be hurtful), you MUST take care of yourself first. Just think in your head (they can't see my illness, so they don't understand) and it might make it easier for the times when they show outward disapproval. It may take time, (depending on how often you interact with them), but if you stick to your NO's, they will catch on (just like the kid and his ABC's). They may slide backwards now and then, but you need to stay firm. Note: you can use this 'training' for other aspects of your life as well.
Example: Possible Scenario:
1. I asked you to __________ ........ not talk about my mean ex boyfriend
2. You did not respect that ........ you kept talking about him
3. Here are the results of that ........ I am hanging up the phone
4. Rinse and repeat :) ........ eventually, they will realize that in order to talk, they will have to omit the ex bf

Sorry for being long-winded, but this has worked so well in my life, I had to share. It is work, but well worth it!
 

JayCS

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It was scary but boy, I saw how worth it it was when I did!
You need to use repetition and eventually they will understand.
Yeah, first times are scary. Need to be celebrated. 🎉 🥳
Even more than it being about them, I think it's about us - about getting used to limiting us and them at the same time, making it into a calmer and calmer habit:
noticing the trigger from a mindful distance, & reacting with this habit before we flare up in anger.
Helps to practice it when we get promo calls.
 

sunkacola

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Spot on! Think of it like teaching a child their ABC's. You need to use repetition and eventually they will understand. It doesn't matter what they think (although when it's a parent, it can be hurtful), you MUST take care of yourself first. Just think in your head (they can't see my illness, so they don't understand) and it might make it easier for the times when they show outward disapproval. It may take time, (depending on how often you interact with them), but if you stick to your NO's, they will catch on (just like the kid and his ABC's). They may slide backwards now and then, but you need to stay firm. Note: you can use this 'training' for other aspects of your life as well.
Example: Possible Scenario:
1. I asked you to __________ ........ not talk about my mean ex boyfriend
2. You did not respect that ........ you kept talking about him
3. Here are the results of that ........ I am hanging up the phone
4. Rinse and repeat :) ........ eventually, they will realize that in order to talk, they will have to omit the ex bf

Sorry for being long-winded, but this has worked so well in my life, I had to share. It is work, but well worth it!
Ha-ha! I like this post. I am a dog trainer, and this is exactly how you train a dog. If the dog wants something, the dog will eventually learn that this behavior will get what they want and that behavior will not get them what they want. there's never any need for anger or punishment or making anyone feel Wrong or Bad. It is just simple cause and effect.

So with people it is exactly the same. If someone wants your company/friendship/time/help/whatever, they can have that but not if they behave in this or that manner that doesn't work for you.

You can think of it the same as if someone yelled at you or was rude or whatever. Eventually, after being nice about it and asking repeatedly for something different and explaining why it is important to you, you would just tell that person that if they don't behave differently they cannot be in your life. Period.
The important thing to remember is you have the right to do this.
 
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