I have been dealing with pain for 12 yrs now and my family acts like I should just stop it. Because I don’t look sick I must be fine. None of them has evan looked into fibro to see what I’m dealing with. I have been off pain meds for almost a year cause they were all convinced I am a drug addict. My dr prescibed everything i was taking to sleep and not hurt as much, and people think I wrote them myself. I wish I could just stop hurting as well, why dont they understand that. My husband got a girlfriend after 17 yrs of marriage, I could no longer do the things he liked to do, he divorced me to live with her and I am alone and baily basicly homeless. ( my husband got a divorce when I was out of town visiting my children this past summer, he told the judge he didn’t know where I was and got everything including the home I owned before the marriage. I am fighting but it had ben six months I have been living with nothing)I am healthy otherwise so I look like everyone else. When I’m hurting so bad I can not walk people in general assume I’m faking my pain. How do other fibro patients get their family and friends to believe that what I experience is real. I am so frustrated with making others understand that I can’t make plans cause I don’t know when I will be hurting and not be able to function according to plan. I have 5 grown daughters that I wish could understand I’m not faking and sometimes I need help. I need to get a job but my pain is so unpredictable how can I work. I have had my own business for most of my life but I can no longer do it all. I an hurting bad 3 to 5 days a wk and I wake up iyn pain everyday. I have been in the house for the lsat wk. I am living with my brother but will have to leave by summer. I am looking for a md here that will evan see me for fibro. That is a challenge in its self. well thanks for listening and I would be grateful fire any advice
Hey there, It is so hard sometimes with family who do not understand us for one reason or enough. I know sort of what you are going through, my father loves me to bits but he took his sweet time to realise that I was telling the truth in regards to how I feel.
If people really think you can just write your own prescription then they are loony, and quite frankly could do with a good tap on the head with the stick of reality. Sorry to be so blunt but there you go. The whole thing about not looking sick is a big problem with some people. It is not just fibro, but a whole plethora of physical conditions and also virtually all mental health conditions. Next time they complain that they are hurting just refuse to believe them because "they do not look ill" it will soon change their minds about problems only being visible.
Although I know it would be preferable to have them use some initiative and look up fibro themselves they are clearly not willing to do it. The solution is a simple one. Print off some information about it and leave it laying around, or give it to them. Even purchase an old out of date textbook online (not expensive) with fibro included and show them it... in the textbook and them promptly smack them over the head with it followed by a "well you don't look like you have been hit over the head so maybe you are imagining it".
I really hope that some of what I have said helps in some small way.
Mikex
Hi Leslie and welcome. It really sounds like you need to be here right now.
First off, have you applied for disability? If not, I suggest you do so right away. It is not a quick process, could take anywhere from 6 months to 2 years but then you would have some money flowing in, and you might be eligible for medicare too.
There are some great pieces written about understanding fibro and I know they were just reposted a day or two ago so you should be able to find them and print them out to show your daughters. I also suggest that you print out some of our conversations here so they can see that we're all saying the same things as you.
Also, could you bring them to your doctor and have him/her explain fibro to them? Maybe, just maybe, if they heard it come from a doctor they might be more willing to accept it.
There is also a page dedicated to resources available to those in need. I'll hunt it down and post it towards the top of the page, although it might move to the bottom of the page or even the next page if more people write to our board. It's called, "Help for low income Americans." I hope that you might find something useful for yourself within it. It has a lot of info in it, so it's definitely worth a look.
I'm GLAD that you're fighting your husband on his gross betrayal of you all around, but especially financially. Whew! That's a new one on me. Awful! I hope you get what's coming to you and extra too, for all of the stress and money you've been through.
Please feel free to come back. It's a good place to be for help and support. At least you know that everyone believes you here, and that's SO important to us, and in regaining our lost dignity.
HUGS to you!!!
Petunia Girl
Hi Leslie, Welcome !!!
You have come to the right place, we can all relate to family & friends not understanding how we suffer, it’s so upsetting when you here " well you look good " yikes… It takes great effort to look half decent, I often think ya you should see me when I’m in bed all day and can’t move.
There are many discussions on this very topic
I see Petunia has pulled up, help for low income Americans
That’s just awful what your husband has done, I’m so sorry, I know without being able to work it’s prob difficult to get the best legal help, but keep fighting it !!!
I hope you can find a dr. To see you, don’t give up…
We believe you !!!
Life is so hard with fibro, and having to start over, All has, I’m sure , made pain so much worse… One day at a time, find a dr.,
I can’t imagine how hard this must be for you…
Stay connected with us, join groups, read and comment on discussions, the friendships here are priceless !
Hugs & blessings
dee
http://www.butyoudontlooksick.com/wpress/category/the-spoon-theory/
Hear it all of the time! Here is a gal who has Lupus and fibro, who wrote a book entitled 'But you don't look sick' and came up with the spoon theory. She has very successful workshops too!
It seems that fibro is a syndrome of the 'over doers', as for family, we all deal with someone, if not many who don't 'get it' and will most likely never 'get it'! Sorry, but it's just true, so you will have to adjust yourself to accepting this. Find a way to make yourself more resilient to their inadequacies to be understanding. Invisible diseases are so hard to get across to others! If they don't see you withering away, they don't understand.
Fortunately we do understand, and there is always a place for you here, Leslie!
Big hugs,
SK