Non-believers

Hi everyone, this is my first post so I'll try to keep it short (but will likely fail).

I was looking for a community to talk to other people with fibro because lately it seems like no one in my real life understands. Today is one of the bad days, I woke up barely able to move, which hadn't been the case the last few days (I was actually feeling good!) so it immediately put me in a sour mood.

I was supposed to babysit for an hour, watch my nephew while my sister went to an appointment, but that isn't possible with the way I feel now. I got yelled at, my sister was angry and my mother was even more upset (also the car wouldn't start so she was angry at that). I got the "you need to find a better doctor and get rid of this pain" tirade. I think that hurt more than my back does.

How do you cope with that? With someone who doesn't believe you and who only sees you as lazy and unwilling to do anything for them. I can't do the dishes or the laundry, I can't stand at the stove and cook a meal and I can't mop the floor or clean the bathroom, not without paying for it later at least.

My nephew is the only good thing in my life right now, and I love watching him play, but I can't get down on the floor with him, I can't pick him up and bring him into another room, I can't really take care of him, especially on one of the really bad days. No one in my family seems to get it. They all seem to think that finding a new doctor would make this go away, that a new doctor would miraculously cure me and I'd be okay, I'd be normal.

I don't even know what to say to anyone anymore. No one believes me. Mom and sis both have pain, but it's real, it shows up on x-rays, it can be seen, it's not fibromyalgia, and I think that for them seeing is believing, at least where pain is concerned. I just don't know what to do anymore. I don't want to be in pain but it's not going to go away anytime soon.


-Samantha

Hi, Samantha - welcome to the forum. People here DO know how you feel, so lean on us!

I know how hard it is when people don't believe you. What gets me is, why would anyone not want to do all the fun things we can't do? Nobody would willingly give up so much! I'm like you, housework has to be done in such little chunks that my house is always messy and dirty. I can get people to do little things, but as far as real, sustained help? Forget it! I look forward to downsizing in a few years.

Don't give up, Sherrine has some great ideas, and others will too, just hold on - -

Debbie

Hi Samantha and welcome to our fibro family where we all understand what it is like to live with invisible pain. I know how badly it can hurt when family members don't believe what you are going through. My one son would continuously tell me that I was lazy because the house wasn't as clean as he thought it should be. It does hurt that he wasnt even willing to try to understand but most of my family has been pretty good about it. I have cancer now so he no longer says Im lazy. lol This weekend I went and picked up him and his brother from the town they are staying at and brought them home for the weekend. I told them on the way home that I might not be able to afford the medication that I will have to take the rest of my life to keep it from coming back the only thing he was worried about was how they would be able to keep the house if I wasnt there and who would take care of his father because he wouldnt be willing too. Kids you gotta love them lol. Anyhow glad you have found us and hope to hear from you soon.
Gentle Hugs
Shirley

hello samatha , sorry your family dont belive you and get it , mine is the same way since they cant see any thing physicaly wrong they think there is no way a condtion can cause so much pain and stff. its greatn here to just read that others understand and get what your going through.
hugs
lisa

I have a large family and not one of them 'believes' that I have this what do you call it disease, conditon , whatever. 20 years of trying to convince them that something is wrong has damaged my connection with my family. I don't really care whether they care about me or not anymore. All I know is that 'I' have myself to worry and care about me. My wife understands and cares very much but, it hurts more that my family (flesh and blood) don't...All I can say is don't try to convince them...And don't give a darn that they are trying to hurt you. They are fools!

When I saw the rheumatologist and then got the conformation a couple weeks later that it was, in fact, fibro, my husbands initial comment was "I think you need a second opinion!" I reminded him that 1. the rheumatologist took 11 tubes of blood from me and I peed in a cup and the only abnormal test was my vitamin D (low of course). Then I reminded him of the MANY trips to the PC, Nerologist, and GYN looking for answers. Anyway, he seems to be more understanding now but I do sense frustration in him when I've been in a flare that lasts several days. He'll stomp around picking up where I couldn't, he won't talk to me as much, just gets kinda cold. I was reall hurt by it at first but now I kinda get it. In a way, he has a right to be frustrated. He's missing out on the ideal family life he dreamt of. I don't think he's ~really~ frustrated at me (though it always seems like it), it's more like he gets frustrated at the situation. samantha, I feel for you! And pray for understanding in your family. When my husband was having all kinds of health issues (mainly his liver), I jumped online and learned all I could to try and help him through it. When he got "huffy" with me initially, I reminded him of that and then asked him "and just how much have you read up on fibromyalgia to understand what exactly it is that I go through nearly every day? HE didn't have an answer and just walked away. I think we've all been there to one degree or another. It hurts. NO doubt about it.

I am still new to all this. (I sd hello in another post). My dh told me our dtr does not believe fibromyalgia is a real disease. I talked to her today and she sd in her opinion it is a "catch-all" for pain that is unexplained. I admit I felt that way too before I did a lot of research on it. How can I get my 23 yr old dtr to understand that it is not that I am just lazy (ok, maybe a little-- I am def spoilt by hubby)? My dtr has always treated me more of a friend or child than the way it should be. I have had health problems all her life. I am tire of defending myself when I do not feel well.

Samantha,
Glad you posted. This is a good topic. Unfortunately my computer is wonky (only on your post so far) and I cannot see all of your post. This is a great group of people

who do know how you are feeling. It is a big help for me to hear what they all have to say and what they think and feel. Some of my family members used to be
condescending, too. But they do not do that anymore. I am very fortunate to have a family who believes me. I think it might be my very transparent face.
Anything I feel is written on there as if by a black sharpie. I don't even realize it is showing, but family can see the change.

Just think how hard it is for us to understand this illness when we are the ones who have it. It is unpredictable and maddening! It must be difficult for folks who don't
have it to understand, too. How can we be feeling pretty good one minute, then bam, seemingly out of the blue, we hit a wall and have to sit down. That has got to be
confusing for us and anyone else who sees it happen.

Welcome to the forum.
Sue

Post Edited (Statgeek) : 11/11/2010 11:46:02 AM (GMT-7)

I know what you mean about not being able to clean your house, do dishes, standing to cook, and all those things people usually take for granted. He doesn't understand how a poke to my body actually does hurt. I take morphine and hydrocodone for my pain and I still hurt so very bad each day. I have been on all the approved meds for fibro, but none of them worked for me, but I am thankful for them because I know there are a lot of people they do help. I was actually wondering if my pain meds were helping until I ran out of them last month and did not have the money to get them for about a week. I rate my pain atm at a 9 or 10, but last week it was off the chart. Therefore, even though I am in so much pain every day, I know that the medicine is still helping somewhat. My husband keeps saying my doctor should be able to do something about my pain, he believes that there is like a magic pill or something I guess. I was wondering how many people have the extreme burning sensation along with the pain. Sometimes I swear my body is on fire, but of course there is no high body temp or anything to show that is happening except my saying it. My husband says he only has one person that has told him she has fibro and she worked in her flower beds all the time and was quite active. So that is the only person he can compare me too. He doesn't understand that I cannot cook his meals or at least I can't without a tremendous amount of additional pain which is already at the unbearable point. He wants it to be like when we were first married and I tell him I wish it could be that way too. He has even admitted to thinking I am just to lazy to clean house and do all those things people normally do. I have tried to get him to read some on this website, but he just says he has already read about fibro and knows what it is. All this to say that I completely understand what you are going through and hope that it will get better in the future.

Gentle hugs,
Helen

Good post samantha, and i know exactly where you are coming from everyone always calls me lazy as well and i was always very athletic and loved moving around till 2005 im only 32 but i feel like 82 with severe leg pain, arm pain, neck pain, low back, no energy, no memory, brain fog, its sooo annoying i have 3 kids and can barely take care of them im sooooo glad their mom is in good shape and not in pain like me i feel so bad all the time like im a bad dad and i try my best, and i always told myself if i ever had a bad disease or anything that gets me in pain im gonna beat it, for some reason i just can't seem to beat this, it's got the best of me and has gotten me really down, i hope everything gets better for you take care