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Posted 9/17/2013 4:20 AM (GMT 0)
I found Bee in another thread and moved her 2 posts here - I was afraid she'd get lost in the shuffle, so here she is ~ Debbie

Hello everyone. I've just joined and looking at the posts, you're all so supportive of each other. I was diagnosed almost a year ago after suffering with various symptoms for 5 years. I began a new relationship just over a year ago. Sadly, he doesn't seem to believe that I have this debilitating condition. He has said on two separate occasions I use my condition as "an excuse". He apologised for saying it last time but he obviously doesn't believe me because he's said it again. I'm sitting in another room because I just don't know what to say to him. It hurts that he doesn't believe me. Have other people experienced this with their partner? Thanks for listening guys xx

Thank you so much for your reply Karen. I've tried the literature before but he wouldn't read it. As you say, it's an invisible condition. People don't understand an illness that they can't see. I've encountered this from my employer, friends and dismissive doctor. That's why groups like this are so important. At least we feel understood. I will have a look at the thread.
Welcome to my fellow newbies and I look forward to getting to know everyone.
Gentle hugs xx

 

Posted 9/17/2013 4:45 AM (GMT 0)
Hi, Bee75. Welcome!

I hear you on the lack of partner's support....mine believes me, technically (he'd better, after 25+ years!) but I know he doesn't REALLY get it, deep down in his bone marrow. I'm sure he believes I would get better if I pushed myself more - ha! If he only knew, I do way more than I should most of the time...he never offers to do anything for me, and there's a heck of a lot I just can't do.

He won't read about it, either. One time, way back when I was first diagnosed, I asked him and the kids to watch a 20-minute video about Fibro. When it was over, he left without a word ;( That hurt. (But then, he doesn't research his own conditions, either. He pretty much forgets about them.) He feels, rather superstitiously, that learning about something gives it power.(?)...So frustrating, as I feel exactly the opposite is true!

Ah, well. It is what it is, and they are who they are. We can only do so much to try to make them understand...

But this group is wonderful. That's why we keep coming back....the support is fantastic! No matter what strange or disturbing symptom you're having, there will be someone who gets it.

Hope you'll keep posting...

Debbie
Posted 9/17/2013 1:53 PM (GMT 0)
Hi Bee, and welcome. I'm sorry your partner is having a hard time with your illness. Sometimes, it takes awhile for other people to actually grasp fibro, and sometimes it just never happens.

You hit the nail on the head when you said that people don't understand an illness they can't see. And fibro is kinda new to the table. It took a really long time for people to finally accept depression as a legitimate illness - not that there is a connection, but depression is another of those invisible illnesses. I'm hoping eventually fibro will reach the same level of understanding.

Until then, we have to be the support system for each other. So come here with any concerns, vents, questions, tips, and support you have to offer. We definitely do understand and get it.
Posted 9/17/2013 6:58 PM (GMT 0)
Hi, Bee, and welcome!  Have you read Fibro 101...the first thread on the forum?  There are some great links that could help your situation.  When you first open Fibro 101 there is an interview with one of the top doctors for fibro, Dr. Daniel Clauw, and what they think is causing this illness.  It is very clear and easy to understand. 

 

There is a link called A Thorough Explanation of Fibromyalgia that helps explain this illness too.

 

AND there is a wonderful link called Doctors Respond to New York Times Article.  The NYT had an article that said that fibro wasn't really an illness.  Well, learned doctors who have dealt with and studied this illness came out of the woodwork and corrected them. 

 

All of these are very good but I see that you said he wouldn't read the literature.  These things in Fibro 101 are relatively short...it's not like you are handing him a book to read.  If he refuses to read these things, I think, if I were you, I would end the relationship.  He basically is calling you a liar and won't take a half an hour out of his life to read something that is so important to you.  I guarantee that things will not improve if he is not willing to make an effort to try to understant the pain you are dealing with. 

 

I know that's not what you want to hear but I really think this is true.  This is, of course, my personal opinion.  Look how unhappy you are right now.  You don't know what to say to him.  There is a large rift in your relationship because he won't even make an effort.  Since doctors are not positive what is causing this illness, there are no cures so you will most likely have this a very long time.  I don't think you want to spend your life defending yourself from being accused of lying.  Fibro hurts.  We need people to help support us or at least make an effort to try to understand.  No one can understand this illness fully unless they have it themselves. 

 

I hope he will read these articles.  You can print them out for him to read or read them to him.  Do let us know if he will start listening.  Have him come on the forum and ask questions or just let him lurk and read some of our posts....including Fibro 101.  It could make a big difference in his attitude if he will do this.

 

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

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