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Posted 2/22/2013 12:42 AM (GMT 0)
I'm new to the forum (however not new to fibromyalgia). I`ve been struggling through for over a decade now. I'm sure this isn't a new topic for anyone out there, but someone please tell me how do you cope when your significant other just doesn't understand? confused
Posted 2/22/2013 12:50 AM (GMT 0)
I hit him. Hard.

Have you tried having your partner accompany you to doctor appointments? There's also a good thread at the top called fibro 101. In that thread is something called the spoon theory. That is a very easy to understand way of breaking it down for our loved ones.
Remember that while this is hard for you, it's hard for your partner, too. They may not understand how to help and be afraid of doing something wrong. I think the best tactic, after the spoon theory, is the doctor appointments. Then sit down with your partner and discuss how fibro affects you. Communication is the biggest key in a healthy relationship. Then you can use my method. Hitting. :P
Posted 2/22/2013 2:48 AM (GMT 0)
Sometimes I think it's best for me to reveal what needs to be said about my fibro to my husband (and the rest of my family) on an as-needed basis. I try not to feed them too much info at a time. I think I've had fibro long enough that they all 'kind of' understand it, and if I'm not able to do certain things, they're okay with that.

Too, they really can't fully relate to what we go through, and I don't want to bore them or overwhelm them.

Funny thing, though, even after all this time, I can still feel bad at having had to cancel plans or if I'm just not able to go some place, even if I know they understand how fibro can affect me. Generally, I am able to go most of the time, and try to push myself as much as possible, without hurting my health.

I think if we just feed others tiny bits of info, if needed, they may begin to understand. Expanding on this a bit, I still cringe when any relative emails or phones me and asks me how I am doing with the fibro. I've learned to not elaborate on my health, but the reason I say I 'cringe' is because I know that if I say I've been very tired (as in chronically, barely able to make it through the day--you all know what I mean, I'm sure!), I almost always get this answer: "I've been tired lately, too."

I don't know about anyone else, but WHEW--anyone who says that and is in generally good health, doesn't have a clue on the fatigue we fibromites get! (I just take a few deep breaths and slowly calm down.....)
Posted 2/22/2013 3:15 AM (GMT 0)
Hi, Holdmyhand, and welcome! You know, my husband didn't understand totally what I was going through. I didnt expect him to understand, either, because i don't think anyone can...unless they are dealing with this illness too. But the important thing was that he loved me and did try to help me around the house. He would run the vacuum and load the dishwasher after dinner...things like that.

I think it's that way with any illness. He suffered from depression but I don't really have a problem with that so I didnt understand what he was going through. I did my best to be there for him but i just couldn't understand how a very successful man thought he was a failure! It didnt make sense to me. But, when he passed on suddenly, I DID suffer depression and that was the first time I truly knew what he had sufferd through all of his life. Do you see what I'm getting at?

I think it's good to try to give some information about fibro so perhaps they would have an inkling of what you are living with. The Spoon Theory, as Angelic mentioned is good. Another good thing is something called Doctors Respond To New York Times Article. And there is another called A Thorough Explanation of Fibromyalgia. These can be found in Fibro 101...the first thread on the forum. You can print these out, see if they will read it, and then see if they have questions. Sometimes members can get their partners to go to a doctor's appointment with them, too.

Ultimately, though, how we learn how to handle fibro and live a good life with it is what is truly important. I personally have not let fibro control my life. I'm the one in control of my happiness. I've found ways to work around it to do the things I enjoy. Of course the first step is to find what works for you to be in control of the pain and fatigue. I hope you have already gotten that under control.

I wish I had a better answer for you. While you are in Fibro 101 check it out! There are good links about fibro and you can learn a lot there. I've had fibro for nearly 26 years and am still learning new things.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 2/22/2013 3:28 AM (GMT 0)
I know it has taken years to get where my husband is today on understanding fibro. I use to cry and vent on this forum. I took my husband to appointments and counselors would talk with him. He just didn't accept it for years. I think with the media and meds has helped some. I use to feel sorry for him because I felt like I was keeping him from having fun or a normal relationship. It has taken years for me to accept my fibro and it wasn't something I ask for.

I do work at trying to make this relationship the best I can. I try not to get over tired when I know we are going out for a date or an intimate night. There are some good suggestions on the net about this subject. I have changed my attitude last few years. I use to complain everday how bad I hurt. I use to due the poor me syndrom too much. I finally stop doing this after it was brought to my attention. It has helped my marriage. The only thing I still have trouble with is staying out late. I need to be in bed because I get tired real easy. I am glad my husband stuck with me, especially during some rough health problems. Having a postive attitude really helps.
Posted 2/22/2013 4:15 AM (GMT 0)
Welcome to the forum :)

Fibromyalgia is difficult for most of us to understand and we live with it. I know it is great to be validated but unless someone is living with the symptoms, they really don't know what we deal with. I know hubby knows, that somedays are difficult for me. I try not to let my conditions get in the way of us having fun.

My hubby is blessed with wonderful health and hasn't taken a sick day in over 30 years. I'm thankful he does not have to feel my pain. He is loving, caring, supportive and helps out, but he was like that before my fibro or my other conditions came in to play. If I need help, I ask....I am lucky to be married to my best friend. Live, love, laugh together...it helps take the focus off the pain.

Hugs, Robin
Posted 2/22/2013 5:01 AM (GMT 0)
Hello,
I posted a thread not too long ago (Counseling) regarding this exact issue. I got some great advice and suggestions. Mostly, My problem is my husband and I can't do the activities we used to do and it has caused a huge strain on the marriage...or I think so. I know he loves me, but I know he doesn't and never will understand what I'm dealing with. I have planned for him to come to my next doctors appt so hopefully my Dr can shine some light on Fibro. I also struggle with painful SI joint disorder and sciatic nerve damage.
I'm hoping the doctor can help open his eyes that I'm not faking and this is a real thing. Also, I try to do my best to let my husband know when I'm having a good day and a bad day and in between I tell him my pain level, whether he wants to hear it or not. :-)
I hope this helps some. Thank you for sharing.
Izzy
Posted 2/22/2013 10:08 AM (GMT 0)
I think it's easier for a family member or significant other or friend to understand if we're doing all we can to help ourselves through gentle exercise like a walk especially outdoors, healthy diet, stretches, supplements, and trying to get a decent night's sleep.
Posted 2/22/2013 5:13 PM (GMT 0)
Holdmyhand,

In my first response, I neglected to tell you that I'm sorry you are feeling this way. I feel people truly have a difficult time understanding what we live with. I think it is important that loved ones acknowledge that we are going through a difficult time and be supportive.

Being open and honest with others helps. I remember telling hubby that I felt very bad about not being able to do so many of the things we used to do together. Telling him how I felt helped him realize what I was going through. I realized too that my conditions did have some affect on our relationship. We had to find other things that we could share as a couple and we did. I think putting focus on having fun makes our relationships easier. If others see me having good times, they are more comfortable around me than if they only heard me complain about pain. I think thare is a reason for the old adage "Laughter is the best mediceine."

Wishing you the best :)

Hugs, Robin
Posted 2/22/2013 6:10 PM (GMT 0)
SO said (at first) that he knew I was hurting and that something was wrong since I wasn't acting like myself. He did research and read about the condition.

After some time passed, he got less understanding. Due to employment, we had to move to different cities. It was easier to not understand, because he wasn't confronted with it every day. When we were together, it was far more frustrating, because we wanted to do things. Sometimes, I had to call 'stop'.

You have to communicate clearly. Sometimes, I have to just sit him down and say, "While I would like to go for a ride, I am too tired today. You ought to go, though" Or "I would like to spend some time with you this afternoon. Perhaps you could go to the grocery store with the list while I clean the bathroom."

When I got a new diagnosis last month, we sat down over coffee for a few hours while I explained and he asked questions. It really helped.

However, you do have to avoid being negative or complaining versus sharing.

The doctor's appointment is a good thing, for those who have SOs willing to go. I wish mine could, but he can't drive 200 miles just for that.
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