I'm finding that most people I deal with including co-workers, family and friends, do NOT understand auto-immune disorders. If they can't see something wrong like a broken arm, burn, etc., they tend to treat me as if I'm making it up, exaggerating or a hypochondriac. They ask you how you are feeling, but they really don't want to know. Of course the result is for me to paste on a smile and act like nothing is wrong which just isolates me that much more.

My husband even admitted he didn't understand. I tried to explain to him that if he took the pain he experienced from a knee injury years ago and put that throughout his body in each joint then that would compare to how I've felt recently, not to mention the fatigue.

Has anyone else experienced this dismissal, coldness, lack of compassion and disregard?? If so, how do you deal with it? Do you just continue along day in and day out feeling horrible physically but putting on a smile and not letting it show? How do you battle the loneliness this brings?

lynn41,

I'm sorry you're not getting the sympathy that you deserve from friends, family and co-workers. It makes you feel that you're suffering alone. It would be so nice to share -- it's an awfully heavy burden to carry alone.

Unfortunately, people can't show understanding if they don't understand. Most people don't have the experience of their bodies over-reacting and turning against them. They do have experience with "drama queens or kings" who play up every little thing in order to get sympathy and be excused from responsibility. So they assume that you fit into the only category that they know.

I don't know how to change that. Perhaps others can offer useful suggestions. But in the meantime, you're not alone on these Boards. I sympathise. :angel:

--Rheanna

Lynn, do you have anybody close to you that understands you? I have my sister who totally understands me and really knows how much pain I am in. I tell her everything, and even though I take up most the her time by talking to her and having her help me with the boys, she is there for me. Having her helps me in so many ways, she has seen me in the worst pain, and barely able to walk. She also helps me with my boys, they are 2 and 4. One day she deep cleaned my house!

It makes it easy if you have one person, or even better a couple of people. My husband is great, and he is learning. At first he wanted to fix me and then I would be better, but he could not do that. It took 7 months for him to work with me and not against me. Having my husband be there for me makes me feel like I can do anything.

As far as people who don't understand, I have them too, and I try to talk to them to educate them about fibromyalgia and myofascial pain, and how I feel. Sometimes I think it goes in one ear and out the other, but I want to make sure that they know what is going on and what I have (fibromyalgia and Myofacsial pain syndome), so they now that I have real chronic pain issues. I don't think some of them believe me, and some of them feel that everybody has pain, why does Kassandra have to take medications for it, and also she stays home why cannot she keep up with her house.

All that stress that we have from having people who do not understand us makes me even sicker from the stress. It is a battle. I hope you can stop worrying about them, and focus on you. Has your husband every gone to your doctors with you? Maybe he would understand your illnesses, and be more caring to you.

Do you have children and if so, how do you deal with it all, like work, kids, house, and husband? I commend you for doing it all. Does your illness ever impact your job at work?

Please do not let anyone bother you. You need to take care of yourself or you will not be able to take care of anybody else. Stress can make you sick or your illness worse. I would not even bother with the people who do not understand, focus on who does know and care. Well I guess you could print out some info about your illness and them pass it out to people. That is how I helped my sister and father learn about fibro, tmj, and myofascial pain. They do not have a computer.

You are number 1, and take care of yourself. This is a wonderful place to come and vent. You will make friends and talk to them everyday. I usually am on the fibro board, and enjoy my writing everyday. It is sort of like therapy for me.

Good luck and keep posting!

Kassandra

Kass3175:


You are very lucky to have your sister - but it sounds like you know that. I don't have anyone close to me. I am giving serious thought to asking my husband to go to a doctor's appointment with me. Maybe that would help him understand. I'm not the person I was two years ago, and he really can't adjust to it.

You have a 2 and 4 year old? How on earth do you handle that? I have a 5 year old and it saddens me that I don't have the energy to play with him like I used to. Some days I have no patience with him because I feel so bad, and then I feel incredibly guilty because it's not his fault.

I totally agree with the in one ear and out the other statement. I thought I had several close friends until all this started happening. I've quit talking to several of them about anything to do with my health because they are not supportive and are more judgmental. What bothers me the most is that they don't even try to understand. As long as I'm happy, joking and laughing - they are right there. Let me have a bad day though - and they avoid me.

I do still work but I am not maintaining my work load like I used to - which is very scary. My job can be so demanding at times. I used to be able to juggle numerous projects and do a good job. Not any more. Another area that is suffering is my house - it's not clean anymore. Nobody really seems to get it though - I just can't do it all.

Thank you for sharing with me. I don't feel as "alone" as I did when I started the thread.

lynn, please don't feel alone. We are all here for each other, and I cannot tell you how much this site has helped me. I try to get on here a couple of times a day, and rest while doing so.

I can't do as much as I used to, especially the house. I try to take breaks throughout the day. I get up and do some laundry and dishes, and then sit down. The boys are very active, and my 4 year old is in preschool at the moment, and he goes tues and thurs 9-11. I made the decision the other day not to enroll him in kindergarten in the fall, and to keep him at his preschool again, but go one more day. He turns 5 in June, and I personally feel he is not ready for full day kindergarten, and it scares me. He is smart and knows all the academic stuff, but emotionally, and maybe socially he is not ready, he still takes naps sometimes. Having said that it leads me to why I feel so good to have made that decision, it was stressing me out. It feels so good to have made that decison. It also gives me another year to get it together, from the fibro,myofascial, migraines, and tmj, and hopefully find a way to get it together in the morning. I don't work, and I have stayed at home for about 5 years. I, at this point, can completely say I am unable to work right now.

I am not sure how you do it, with work and family. My house suffers too, and my husband is not as hard on me as before. He is realizing that I am doing the best I can. I am trying to get the boys to be more independant and do some stuff on their own. It takes us so long to get going, like get dressed, drinks, snacks, and it falls all on me. My 4year old should be doing some of this stuff, and I am trying to get him to do it himself. Do you have any suggestions?

I hope this site helps you as much as it does me. I feel like I have a lot of friends who support me here and that is a great feeling. Please keep posting, and vent, let it all out, or just ask questions.

Kassandra

Kassandra:

I'm finding that reading and posting here does help.

That's the way I feel most days too - work for a while and then have to rest. You used the phrase get it together. I think every day, "Okay, today is the day I get it together ... get my house cleaned, get the little projects taken care of that just keep piling up, etc." . Most days I feel like I'm barely scraping by to get the bare minimums taken care of.

My son is very active too, and I can't imagine having another child to have to take care of. I think only you know whether your oldest is ready for kindergarten. I've realized that just a short time period like 6 months can make a huge difference in a kid. I can't believe my son start kindergarten in the fall. Seems just like yesterday he was crawling. It's so hard for me some times to make my son be indepedent. I think he knows this too! I am constantly having to remind him (and myself) that he's a big boy now and needs to be doing most stuff by himself.

My husband works graveyard on the weekends - which makes it difficult for me to get any rest on the weekend. Then on Monday I have to get up and start all over again.

I have my first rheumatologist appointment tomorrow - finally after 17 months. I am very nervous and anxious about it too.

Thanks for listening and letting me vent!

I feel like some people are non understanding due to lack of education...for a while I tried to act like I wasn't sick because I would get told I was lazy or a hypocondriac....and my husband would actually get mad because he didn't understand and that was his way of dealing with it. Now he is better, and more sympathetic, now that he has met my doc and sees all the meds I take. You know, my kids are even more understanding now, they could touch me and I would cringe from the pain and they didn't understand that. Then comes the rest of my family...Mom etc....a little too understanding...:)
don't get me wrong, it is nice, but sometimes like my grandma has said herself, sometimes when you don't feel good you don't want to be asked how do you feel. Does that make since???

P.S. My kids are grown, but I have a beautiful 2 year old grandson that I want to be able to enjoy:(. My doc asks me everytime I go in if I'm still working. I am, but sometimes it feels like I can't go much longer. I told my husband I would try to work to get my car payed off...lol...but I'm not sure if I can do that.......I go Monday to see a gynocologist to see if I'm a candidate for a hysterectomy, which would put me off work for a while, it's sad to think that my way of resting is another surgery!! But the surgery will help with other things too...long story... I do work full time at an office where I do A LOT of walking, and it is taking its toll...tiff-cher

It would be nice but just isn't going to happen. Everyone you know has a story and perhaps they just don't have enough energy to put into your story. I am never so close to my coworkers that I wanted to know the nuts and bolts of their life. Of course people that know will ask you how you are and that is a huge deal and accept it for what it is. For that moment in time they do care...but they are not going to want to know more and we all get through the day the best we know but a better way to do it is to smile. When I pass people on the street and they say 'how ya doin today'...they don't really want to know but it is just nice that they acknowledge I'm there....so ya smile and say I'm just great today(not really but it isn't their burden to carry) Dwelling on ourselves too much is not healthy. Telling everyone that we see our story is not healthy. I personally think it is better for us that we keep our story to ourselves and work on the positives. good luck.

AnnD,
I do agree, I say I'm fine all day long. I work at a big office and I really don't know anybody on a personal level. As far as family and friends, some understand and some don't, I guess, but it is nice to get a little empathy sometimes just not overbareing(sp?).