Grrr people not understanding! (rant, but whatever)

RonneyKay

Do you guys find that people don't understand your condition and judge you rather quickly for it?

My husband, we have been married for 18 years, I was diagnosed with fibromyalgia about 12-13 years ago, and I have since been diagnosed with arthritis in my hands, and I'm suspecting its also in my feet as they are quite painful. My knees are now giving me trouble as well, but this could be caused by my weight, which I am working on.

Anyhow I am wondering if any of you ever experience guilt because of this? Others just don't understand do they?

Lets support each other. yes today I am still living with it, and it sucks cuz i don't WANT to be suffering from it. But the weather changed and its rather cold... well, for phoenix (its in the 50s) and there is also alot of moisture in the air, so I am sure you all can relate to how I am feeling right now.

Thanks!
Ronney

RoadkingDavid

Oh my gosh, RonneyKay. I was diagnosed with CFIDS in my 20's and suffered for nearly 10 years with this mysterious ailment. I was even on Social Security Disability for six years as a result of the fatigue and pain and ailments associated with CFIDS. I understand totally. I am well now, but I secretly fear a relapse every time I wake up sore or can't sleep or sneeze more than twice. Even doctors don't understand. One doctor I had told me to find another doctor, as he didn't have the time to spend on such a diagnosis. No bedside manner. *kitten*.

I cannot explain how I got better, but I did. Apparently, the virus, if it is a virus, can run its course for some lucky people. You have to learn to "dance with the serpent" or pay for it every time you overdue a hike or other exercise.

RonneyKay

Thanks daddio, you always seem to know the right thing to say. I am still not "suffering from" but I am *****ing about! hahha

I plan on hiking tomorrow, alone, but its a mild one, and I definitely wont take the dogs (jack russell and beagle) and go slow. Papago Park is where I will go and its very easy. I'm thankful!

Ronney.

PS also I need to burn off these cocktails from tonight! hahhaha

Roni_M

Invisible illness seems to only be understood by people who have them and maybe those closest to them. Lucily my hubby "gets it", but I have friends who have forgotten at times that I have health problems (PsA & ITP). Some days are better than others and I almost feel normal...other days getting out of bed is a challenge! It's hard for people to understand the "swings" these illnesses can take.

Now that I'm walking more some things feel better and some things feel worse. The doctor is sending me to the rheumy to put me on a DMARD. I'm a little nervous about jumping into drugs that strong but I guess I can't avoid them forever. If it keeps me moving that's all that matters!

I'm hoping the weight loss will help keep me moving and allow me to avoid the stronger meds. It's going to be tough but I'm happy with my progress so far! I'm impressed that you can manage to hike Ronney.... At this point walking sidewalks is all my joints can handle. Hopefully I'll get to that point someday!

txbutterfly69

Nobody seems to understand unless they are going through the same thing. Found a great support group on facebook that has helped when I need to talk to somebody.

emmiexjay

YES YES YES YES YES! THANKYOU! lol i'm glad i'm not the only one..

I'm 22, i've been battling for 2 years now with this asthma problem in a year i've lost 50lb I know it's not a lot but it is to me.. i've gone from wearing a 3/4XL :$ to a XL/L! and i'm fed up of being treated like it's all to do with weight.. i have fibro, this asthma problem aswell mild depression.. it's hard when you tell people they just look right through you like you're some lazy sh**

mydogdakota

I had a pretty bad day physically. I guess getting out of my routine over the holidays messed me up more than a little bit. I was so tired today that I went back to bed and slept literally all day until it was time to go get my son from day care. People just don't get how you can do that, but every once in a while I get so exhausted that I have to do it. I don't feel great this evening but it's better than this morning. At least it was on a day off and I didn't have to call out sick.

I am on Lyrica for fibromyalgia, which I think is actually helping me gain weight because I don't really feel when I'm full. It's great for pain but the problem is it dulls everything, and not just where you are having fibro issues. I'm thinking about going off of it; must talk to my rheumatologist on the 12th to see if she agrees.

Also having an issue with joint swelling right now. Can't take Humira because I had a round of antibiotics, and you have to lay off the Humira for 2 weeks after the course of antibiotics ... basically, a full month without Humira. The inside of my left knee is about twice what the right knee is and it hurts when you put the slightest bit of pressure on it. It stinks but I am dealing with it because the alternatives suck.

My hubby is pretty understanding but every once in a while he gets this passive-aggressive thing going about housework. He knows it's a problem but he won't touch it because I am not touching it and this can go on for weeks sometimes. I finally got my mom to start helping; I have to pay her to do it but it's worth every penny because sometimes I just can't do it.

My son is 4 and he only gets it if he jumps on me and I say something. Then he's all "sorry, sorry Mommy" and you can tell he didn't mean to do it. He just forgets that Mommy has the ouchies.

Outside my inner circle, I just don't even talk about pain anymore because people don't get it and they really won't get it until they're old. It's fine with me. Not my problem, it's their problem. I've had to get rid of friends who just don't get it. I have one friend now who I had to stop going grocery shopping with, as she can run all over the store and I get lost behind her. She thinks she's helping but she really isn't. I don't want to hurt her feelings so I just don't go with her anymore. I used to work out with her sometimes but it always felt like a competition. So now it's me on my own and I deal with it.

RILEYRED

YES,YES,YES AND YES, I can relate to all of you! I have no other friends with Fibro,people think you are hypocondriac, lazy,anything but actually in pain. This disorder has so many levels other than the pain. I now have IBS because of it, depression because of it. We all need our own island with warm tropical breezes, just for us Fibro buddies!! I can tell when it's going to rain or snow 2 days before it get here!lol RoniM, I am glad your husband gets it, mine doesn't and he has arthritis!!!! Go figure. He thinks I should just keep on trudging along and ignore the pain. I do have something I use called a TENS UNIT, if you want to know about it, just ask. It is pretty teriffic. Hang in there my friends, cause that is about all we can do.

emmiexjay

need to add something.. because of my fibro and asthma condition "normal" exercise is out of the question.. i'm fed up of people telling me to get out to the gym.. urm.. i can barely move the sofa backwards and hoover nevermind go to the gym!

RILEYRED

The hard part and only hard part about being on MFP is hearing other people talk about their work outs on epuipment I have never even heard of, because I can't work out. I can walk, dance a little, stretch, clean my house, so when that is my work out for the day, it is almost embarrassing to write down. I do however, have some excellent friends who understand, and the ones who nag at me, and say, "housework doesn't count", I usually end up deleting sadly. I have learned that I can only do what I can do, not what makes everyone else happy.

gavians

RILEYRED -
I believe housework and other daily activities count as long as you have set your BMR based on a sedentary lifestyle. Someone who already claims an active lifestyle on their BMR already includes those types of activities, IMO.

It is unrealistic to expect results like you see on the Biggest Loser with a FM sufferer. And others think we are lazy and whiners. Just one who doesn't understand to go do their full aggressive workout the next time they have the onset of flu symptoms with an aching body. They usually go home sick and lay in bed.

The important thing is that you pay attention to your body. Do your best to balance the daily expectations of living in society and exercising where you can. Paying attention to your calories and activity are very important to find that balance. We just need to accept the fact that we can eat a whole pizza and run 10 miles to cancel it out.

BE SMART AND STAY STRONG!

RILEYRED

Thanks gavians,very nicely put. I love this group!!!

lottichapman

I find people can be very patronising, at the school gates a mum might see me with my stick and they sort of speak to me like i am a small child "oh are you hurting today? Oh you poor thing!" or they just cant grasp that you can be in constant pain. spending night after night with little or no sleep. If people ask me how I am I just say "so-so, I have good days and bad days" The one place I have found a real comfort is on Facebook, there is a page I joined called 'Chronic Pain Support Group' it has been a godsend! we are from all walks of life, all over the world and we have different reasons for being in pain. But we UNDERSTAND EACH OTHER! We can have a good rant and a moan and we are not judged and we don't get any patronising responses. We all know what it is like to be in constant pain and in some cases it is not always obvious what the cause is so people who don't suffer with chronic pain just don't get you, they are either patronising, treat you like a child or retard or they just get fed up! But in this group we get none of that. It's like "Oh I hear ya", "Sorry you've been suffering", "I've had a rough time too" "healing hugs" etc.. sometimes we moan about the side effects of our meds or we ask if others have the same side effect as you and how they cope. sometimes if we are prescribed a new drug or treatment, we ask if someone else has tried it and what do they think, or we might have tried something that has helped in some way and want to share it or suggest it, we share useful web pages and from time to time I have seen posts from drugs trials for certain treatments etc.. But the main thing is we NEVER judge one another and we we can have a rant and a moan and we understand even though we might be in pain for different reasons or whatever. I think I would have gone insane had it not been for that support group.
Love and hugs to you all
Charlotte
xxx

JoyfullMovement

Yes, I relate also. I was at a family gathering and someone said "They say Fibro is in the head and not real". Uggghhh! I politely told her it was real and I have it. I am sure she thinks "THEY" know more. Many people suffer in silence, fibro, HMS, Endometriosis. It is another layer of pain that come with these types of illnesses. I am glad we have each other . It helps to have someone to listen who totally understands. Thank you all for sharing.

vittix

Im glad to have a few pople in my life that are understanding and there will always be ppl who are not and can be real jerks some of them Dr's. This is something i wouldnt wish on anyone. I keep hearing about some of the new meds coming out and a few ppl have asked me if i have tried them I have but they didnt work out for me. If they want me to feel better then don't treat me like im playing sick. Sorry had the nurse roll her eyes at me this week when i told her i had fibro. Not the 1st time still pisses me off. Im thankfull for this group and the fact we all hold our heads high even when it hurts LOL

txbutterfly69

I understand. My own husband does not understand my pain. :-( Not much support at home. So on my own.

RILEYRED

People will not understand unless they suffer with pain, I don't think most spouses get it, your kids, family, hell, not even the doctors that are treating you understand how desperate we are for help with the pain. I have not heard of any cures, some meds.take the edge off, but don't make us pain free. I did meet a woman the other day who was diagnosed with fibromyalgia, and a couple other things, she was put on several meds., and she said she actually got worse after starting on the meds. She went to a Homeopathic doctor, he did some specific blood work, she had high levels of mold poisons, mercury poison from her fillings, etc. she was detoxed,and is still going thru all that, is eating "clean" and she swears she is pain free and almost to a point where she feels better than ever. Something to think about I guess. Good luck everyone. Red

ravenclawseekergirl

Being 19 and having joint pain since i was 13/14 (i have Hyper mobility syndrome {HMS}) people tend to tell me that i cant have joint pain, 'because only old people get that'.
It took me a long time to get this diagnosis and so i used to tell people that i had arthritis in order to explain how i felt and get some understanding of what was going on in my body. Most people have no idea what HMS is and automatically think that you are 'double jointed;. I'm not double jointed but all my joints do bend an unnatural amount out of what they are supposed to. When you tell them this they're all show me.

You get very little support from people around you because they're sick of what they perceive to be whinging. They don't understand what it's like to be in pain all the time day and night and how what your capable of doing can change enormously from hour to hour. My mum and dad used to say 'tell us when your i pain' , but not now because i would just be stood there going "Ow ow ow ow ow ow ow ow ow ow ow ow ow ow ow ow!" all day long.

People dont understand why i wont take pain killers. Doctors first told me to take paracetamol which didnt touch it so they then prescribed Diclofenac of sodium which i had a very bad reaction to. That scared me and neither so much as touched the pain and when i came off them i was in so much more pain because i didnt have that natural painkiller being made by my body. .

People dont understand that i feel old and that i haven't really had an adolescence because of it. I couldnt keep up with everyone else. I've basically been told it could get better, it could get worse or it could stay the same...knowing me, this is it for life. There's an awful lot of it ahead of me and that's somewhat of a daunting prospect.

raven

Marep50

I have people in my life who go to the doctor and get a diagnosis of FM without ruling out everything else. Then, after a few weeks they are "cured" and don't understand why I still have it. In my mind I don't have fibro, I feel good mentally when the weather is good. But, on the days leading up to bad weather, it is hard to get off the couch and the depression takes hold. My mother is the only one who understands and believes what I am going through. My husband of 27 years tried to unnderstand but finally decided it was all in my head. A few months later i divorced him. I would rather live a happy life alone than have someone who said he "was disappoiinted in" me.Of course that was not the only reason for the divorce, but is was the proverbial straw that broke the camel's back. I used to tell people about having FM but now I just say I'm having a bad day. Reading the posts from this group have made me feel not so much alone.

gavians

I have people in my life who go to the doctor and get a diagnosis of FM without ruling out everything else. Then, after a few weeks they are "cured" and don't understand why I still have it. In my mind I don't have fibro, I feel good mentally when the weather is good. But, on the days leading up to bad weather, it is hard to get off the couch and the depression takes hold. My mother is the only one who understands and believes what I am going through. My husband of 27 years tried to unnderstand but finally decided it was all in my head. A few months later i divorced him. I would rather live a happy life alone than have someone who said he "was disappoiinted in" me.Of course that was not the only reason for the divorce, but is was the proverbial straw that broke the camel's back. I used to tell people about having FM but now I just say I'm having a bad day. Reading the posts from this group have made me feel not so much alone.

You are not alone. There are more of us out there than you think. I have been recently divorced and I think FM was the largest component. Her lack of understanding my pain and fatigue turned into disappointment in me that I was so "unengaged" and "irritable". well, duh... I felt like crap all the time. I felt as though I gave 1000% until I coudlnt move, but that wasn't good enough.