How do you get family to understand Fibro?
seekinghelp38 - May 6th, 2009 3:38 PM
[ Original Post ]

Im new on this forum, and was wondering if any of you out there had any problems as to getting your family members or signifcant other to help you with your disease?

My kids 21, 11 and 7 all seems to know when mom's not feeling good or mom's hurting... they try to accomidate me and massage my neck.

But I can't get my boyfriend to see what this disease is doing to me, he is 13 yrs my junior, but that's not any excuse, other than imaturity and ignorance. LOL But what is it that, I can do, to help him see? I tell him I'm no spring chicken, and I've done it all, marriage..kids...life. Yet he's still with me, he wants to help me, he can't seems to grasp the fact I am im pain. Maybe it's because even through all the adversities I'm still smiling, still laughing... and he sees me in a different light? I'm not too sure.

Has anyone out there gone through anything like this? What did you do? How did you get them to understand?

Thank you so much!!!

Comment


 

cokama - May 22nd, 2009 11:04 PM

Hi seeking help sorry you are going through this it a very hard situation ah and know how you feel. I am newly diagnosed 4 months ago and explaining to friends and family has been so hard, some get it and others dont. The best thing I did with my partner was read through some information together, and he hates reading ha but he knows I going through this stuff and if wanted to help he needed to learn. He doesnt totally understand it and I've got to learn to be patient when he has a naive moment ha. He is 12 years my junior so I also been a bit more around the block than him but in time they will understand. I too try to keep a positive face and smile so maybe this why they get bit confused ah because we very good at hiding things. Maybe with our other halves we need to be more open about the pain etc. I dont know if have helped at all but just wanted you to know you not alone :)


lizbet - May 23rd, 2009 6:11 PM

Hi everyone I too have similar problems with family and friends not understanding. I think its partly that no-one (including me until I was diagnosed) has heard of fibro and just cant understand that it can be as bad as we say it is and still look well! I had to finish work thru fibro over 2 years ago but am constantly being told how well I look which is really annoying sometimes! I also think its what you say about smiling and laughing thru our problems. When someone asks how I am I dont like to say 'well actually.....' so I usually say 'oh not so bad'
so consequently they dont get it. Its the same with family. I dont like to keep saying I cant do this or I cant go there and try to keep going and so no-one ever 'gets it'.I dont know what the answer is, maybe we will all have to become moaning minnies in order to become understood!!
Hope you all are having a good day. xx


axxie - May 23rd, 2009 7:11 PM

Hello seekinghelp38

Send them this site on their email address, and if that doesn't work, ask your family to go to the book store and buy you this book.

Fibromyalgia and Chronic Myofascial Pain,
A survival manual
Second edition
authors
Devin Starlanykl
Mary Ellen Copeland.


Fantod - May 25th, 2009 1:16 PM

Ask your boyfriend to imagine that he has the flu 24/7. You can go to the National Arthitis Foundation website, the Center for Disease Control or this website and have him read through the posted information.

Here is my best description of fibromyalgia (FMS).
Fibromyalgia is a disorder of the central nervous system which causes the pain receptors to become stuck in the "on" position. There is no cure and the mechanism that causes it is not understood.

One of the many "perks' of FMS is unrefreshed sleep. You need deep sleep in order for the muscles to repair themselves after the days activities. Lack of deep sleep causes muscle pain. The longer you go without restorative sleep the worse the pain will become. It is a viscious circle. There are many other problems associated with FMS including digestive issues, stiffness with motion, vertigo, headaches, and depression to name a few.

I assume that you are seeing rheumotologist for treatment. Amitriptyline is commonly prescribed for sleep issues. Cymbalata or Lyrica for widespread pain. FMS can be managed to some degree but the person who has it must learn to adjust their expectations. Rest is extremely important. You must find the balance between your illness and the demands of everyday life. If you are not getting the correct treatment, you should take action immediately. You can go to the National Fibromyalgia Association website and ask them for a referral to a fibro-friendly rheumy in your area.

YOur boyfriend may be a wonderful person who simpy can not empathize with your situation. Many of us have family members and/or friends who just don't get it. It can also be denial because he just doesn't want to accept that you are ill and not the same person anymore. The bottom line is that you have to take care of yourself and say "no" when you are really feeling up to an activity. I speak from experience when I say the payback is hell.

I that my comments are helpful to you in some way. Take care.