When they don't understand

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Trellum

Legendary member
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Jul 17, 2013
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DX FIBRO
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04/2011
Country
NL
State
NL
I have been feeling so depressed lately, I just came back from Europe (I was visiting family). I had a great time and everything, but a family member in specific made me feel a bit down. I thought this person really understood how bad things were with my health, but it turns out this person doesn't at all. This made me feel so down, because I thought this person really did and that made me feel much better :cry:

I guess you can't expect people to truly understand what you are going tru, specially if they aren't or haven't gone tru something similar. I guess I will have to learn to cope with this on my own.

I was also told by this person he didn't like to talk about the topic at all :cry: I didn't even talk about it that often! And I didn't really vent with him or anything, just made some comments on it in the past, but apparently that was too much for him. So this forum will be the only place where I will vent now on :cry:
 
What a way to ruin a great family vacation. :( I am sorry this person made you feel so depressed, but if they choose not to listen or believe there is not much you can do about it other then shrug your shoulders and move on. It is hard when it is someone you really care for, but try not to dwell in sadness to long as it is harder to climb out of that self-doubt and self-pity thinking.

I was so excited for you being able to go on this trip and cheered your sucess from afar when you got over your infection in time to go, so my friend please don't let this other person put a damper on the wonderful trip you had. Try to be extra strong and let the sunshine in your life again. Hugs! :)
 
Thank you so much :) I will try to do that! I'm still feeling a bit depressed (I've been too hormonal lately!), but I believe I'm getting better and better :) I feel much better now, but the first 3 days back home were just awful (I'm a very sensitive person). Looking back I did have a good time there :)

I was also happy I could get rid of that nasty infection before going there, but the trip back and to that place wasn't easy! Ever since I came back I feel a lot nausea and dizziness, I will go see the doctor soon, I think the average dutch diet didn't do wonders for my colon (I've IBS and colitis!). While I was there I got sick with bronchitis, by the end of the second week, hehehe! I'm still coughing and it's been one month already! Ah well, I'm still alive and kicking! I survived the Netherlands ;)!
 
Could you give us all a bit of what it is like in the Netherlands? I have never travelled outside of the USA, and would love to know a bit about this other country across the ocean from us. What was the climate like and the towns and oh, I don't know some of the culture and customs, that are different from us over here?

Sorry to hear you got bronchitis while you were gone. Hope that you get better soon. :)
 
I'd like to add a complaint about when they don't understand/are just in crazy denial.

My mobility has gotten a lot more limited in the last few months - each month I have a big flare, and each month is progressively worse. My husband decided we had to go on a spring break ski trip, so he made arrangements for us to go to Canada....well, he didn't ask ANYTHING about accessibility, and he's assuming that since I won't be skiing, I'll handle all laundry and groceries. Well, the laundry is on a different floor (accessible only by stairs), I can't carry the baskets anyway, and the grocery stores are walking distance...but how to get the groceries back? CARRY THEM. Uh...I can't do stairs without help, and I can't carry anything without triggering a flare in my arms and shoulders. And it never crossed his mind that this might be a problem for me. Denial much? Not to mention what cold does (we live in Texas, so that's not a problem most of the year).

The really frustrating thing is that my mom also has limited mobility (arthritis and neuropathy from chemo) and he KNOWS that when I make her travel arrangements, I ALWAYS ask about accessibility and arrange for anything that would help her not be stuck - drivers, deliveries, whatever. I make sure the laundry is IN THE CONDO. It isn't hard...and it never crossed his mind that he could ask about these things too.

Yes, I could have taken over the arrangements, but frankly I was pissed that he insisted on going on a vacation that completely excludes me (I was voting for Costa Rica, or at least someplace warm). Grump!
 
Hi Laura! Wow, that sounds like a real case of denial! Don't feel bad about it, most men seem to be that way... sometimes I wonder if they just play dumb too much or they are just clueless or just plain inconsiderate or selfish? So many options there, lol. I'm guessing your husband is just assuming things aren't as bad as you say, sometimes that helps them cope, because to be honest living in denial seems more comfortable that facing the reality (I lived in denial for a while).

Have you told him you are upset he didn't ask about accessibility? If you haven't you should really told him, I think it's important to talk about that kind f things very openly. Just tell him how that made you feel and why it upsets you. I'm sure he will never do that again!
 
Could you give us all a bit of what it is like in the Netherlands? I have never travelled outside of the USA, and would love to know a bit about this other country across the ocean from us. What was the climate like and the towns and oh, I don't know some of the culture and customs, that are different from us over here?

Sorry to hear you got bronchitis while you were gone. Hope that you get better soon. :)

Hi 1sweed :)! Sure!

Well, I noticed several things while I was there... it seems most people over there love drinking coffee! My relatives drank a lot coffee the whole day, before and after dinner sometimes.

The dutch malls (in Hoorn and blokker) have way too many pastries, lol. It's seems dutch people really love processed foods! Every where I looked there was some cake or bread or cheese! I had never seen so many desserts in my life!

There is a chain of stores named ''action'', in that place you can find a lot wonderful things for very cheap, yes, even food, like for example snacks! The prices are ridiculous! I'm not surprised tho, because dutch people love buying things for good prices (more for their money, lowest price always!). They also sell household items there, as well as glassware and clothes. A pretty nice place to buy your underwear from ;) Hehehe!

Almost everyone knows how to cycle there, the streets were too narrow for my taste, so I doubt I will ever be driving over there if I ever move to that place.

The weather was so strange this winter, everything was so green and a bit too warm for that time of the year. I mean, I was there the whole month of February, but the plants and trees were growing as if spring was just starting. I was told this was the hottest winter in the Netherlands in many many years :)
 
Thanks Trellum. Yes, in fact we had quite a heated discussion about it. He had put a lot of effort into making sure we were in a location where I could get to stores easily, and where there is a sauna and hot tub and even hot springs while they all ski, so it's not like he was completely thoughtless. It's just that he didn't think anything about the condo itself and then refused to call them to ask, and when I googled it, it turned out to be the "opposite of accessible" and the worst possible one where we are going - stairs into the building, stairs (no elevators) to the 2 bedroom condos, and stairs within the condo to the bedrooms. Stairs to the restaurant. Stairs to the hot tub, laundry... There ARE other places in the area that really are VERY accessible. If we have to, maybe we can move.

Also for some reason he's really embarrassed about it. He lies when he has to come home to deal with kid stuff when I really can't get around/drive. I used to do triathlons, ran a LOT, was really active. Now I can barely walk a mile to Starbucks on good days, and I hurt after. BUT it's been coming on for YEARS so it's not a surprise, except that it progressed so much in the last 6 months. Urg. We've been to counseling about it...I think we need to go back.
 
I can only speak from the other person's point of view. If you aren't there, it really is hard to really understand. I know this because I help my husband to deal with all of his pain associated issues, but I myself don't have them. I have to admit that there are some times that I would like to strangle him because he complains all the time. But, I love him and I haven't strangled him and I don't think that I ever will.

What I'm getting at is can a person really understand what another is going through if they haven't walked at least a mile in their shoes?
 
That SUCKS. I'm so sorry you don't have the support you thought you had! But you're not alone to cope with it, because you have us. We know what you're going through and we know how bad it is.

But you can't convince everyone. Just say "no" when you're asked to do something you can't do. Your family and friends might resent you or not believe you, but you have to be in control of yourself and know your limits.

I'm very allergic to corn, and I was born with the allergy. My own grandma never believed this - to this day she doesn't buy it even though she's seen me break out in hives and get very sick from a corn reaction. She still says things like, "I bet if you just tried eating a little more of it all the time that your body would adjust and get used to it. I would try doing that it if I were you." I don't always trust my grandparent's cooking because I don't believe her when she says she added no corn products. Even though I resent that she doesn't believe me and doesn't take my health issues seriously, I don't let it cause problems between us. She's still family, and I value her as my grandma too much to let this issue be a constant fight for us.

Maybe, with time, your family members who don't believe you now will come to accept it. Just be honest and true to yourself and stand up for what you need.
 
I don't understand how people can just go about their lives, and not even try to understand what someone is going through that has Fibromyalgia. They should walk in their shoes in their mind at least, and try to imagine what life would be like if they had to live with pain every day, or confusing thoughts in general. It is like they are heartless, but, maybe they just don't understand, because, this condition is confusing. If this is true then, they should go to counseling, and, get educated on the condition, and then they can give more support to their loved ones.
 
Sometimes I think it is a form of envy, which sounds strange but they think we have fibro as a means to get attention. You know the family or friends show more concern for you then them. Or we got SSD, but they could not get it so that means we are faking our illness. I have come across both types of reactions in my own family and all I can say is boy do they have it all wrong.

I don't get extra attention, frankly my illness is not there as far as family and friends are concerned. I am pushed beyond my limits with errands and being a caregiver and they never ask how do you feel today. When I say I need a break, only then is help offered, but not given. I don't understand it either, but all we can do is keep on doing the best we can.

Trellum, Thank you for that glimpse into the NetherLands. :)
 
You're welcome 1sweed! You sound like a really strong person and an example to follow! I will try to be stronger and be my own support system. I once heard about being ones support system, but I thought it was silly, lol. It doesn't sound so crazy now, not at all.

I guess I better start writing a diary or something like that, so I at least can take (off my chest) all those things that overwhelm me on a daily basis. Because it seems not many people nowadays are willing to listen, let alone understand and at least say something encouraging. It would be great to have a support group for people like us where I live, or at least a support group for people who suffer from chronic depression. That would be excellent, similar to the AA program (my mother attends the EA meetings). I truly need to stop depending on family and relatives this much, I need to find support and strength within myself.
 
I don't understand how people can just go about their lives, and not even try to understand what someone is going through that has Fibromyalgia. They should walk in their shoes in their mind at least, and try to imagine what life would be like if they had to live with pain every day, or confusing thoughts in general. It is like they are heartless, but, maybe they just don't understand, because, this condition is confusing. If this is true then, they should go to counseling, and, get educated on the condition, and then they can give more support to their loved ones.

I don't understand either, Jenny, but I'm guessing they just don't get it because they are no going thru the same thing. Maybe if they did they'd see things differently. Now I'm dealing with a lot health issues I didn't had to deal with some years ago, and I recall well when someone told me they had what I had now... I didn't really think that much about it. I did fee sorry for the person, but I didn't really what it was like. Well, I do now and isn't pretty at all, but this has made me a better person and try to do my best every single day :)
 
That SUCKS. I'm so sorry you don't have the support you thought you had! But you're not alone to cope with it, because you have us. We know what you're going through and we know how bad it is.

But you can't convince everyone. Just say "no" when you're asked to do something you can't do. Your family and friends might resent you or not believe you, but you have to be in control of yourself and know your limits.

I'm very allergic to corn, and I was born with the allergy. My own grandma never believed this - to this day she doesn't buy it even though she's seen me break out in hives and get very sick from a corn reaction. She still says things like, "I bet if you just tried eating a little more of it all the time that your body would adjust and get used to it. I would try doing that it if I were you." I don't always trust my grandparent's cooking because I don't believe her when she says she added no corn products. Even though I resent that she doesn't believe me and doesn't take my health issues seriously, I don't let it cause problems between us. She's still family, and I value her as my grandma too much to let this issue be a constant fight for us.

Maybe, with time, your family members who don't believe you now will come to accept it. Just be honest and true to yourself and stand up for what you need.

Thanks a lot, Siderea! That was a really good example of what I should be doing. I didn't take this too personal, by the way, but it did hurt to find out this person isn't even half as supportive as he said he was. It hurt, but I went on. I still love this person, but well, now I know the truth.

By the way, I'm so sorry to hear your grandma doesn't believe you! I don't have food allergies, but I've had allergic reactions to some foods (because they weren't very fresh) and I know how dangerous and scary it can be when you have a reaction. I'm glad you are not letting this affect your relationship with your grandma :)
 
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