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Old 04-08-2008, 04:50 PM   #1
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lynn41 HB User
How do you deal with people that don't understand and/or don't care??

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?

 
Old 04-08-2008, 10:59 PM   #2
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teddyjane HB User
Re: How do you deal with people that don't understand and/or don't care??

I so feel where your coming from...I had wanted to vent about the same thing when I got online tonight. I find that not only do friends and family have a hard time understanding something they can't see (until I've put on brave face for such a long time and just wreck myself and take on a seasick sort of look). I have heard more times than I can explain "but you look so healthy" and "well what does it feel like"? How can I explain the hundred painful and uncomfortable things happening in my body in different combos all the time.

Some people do understand...good friends, husband, mom...but understandably they get frustrated with the fact that I am always sick (for the last 6 years) and it starts to wear on them because they are human. It's so hard because I often feel like they are frustrated with me. You are right, sometimes it's too awful for other people to think about and they are convinced you aren't trying hard enough or that if you really are suffering that much they don't want to have to really think about the reality of it because it makes them uncomfortable.

All I know how to do is remember that you are not the disease...that it's some interloper that is abusing your body and hindering your life. You must take care of yourself first and foremost...maybe people will understand, maybe they won't. Think about what you would do if one of them was telling you how ill they were and how you would handle that.

The hardest part for me is that I often feel that my own doctor seems to get annoyed that I am not getting better or doesn't seem to sympathize with how much I am suffering...if I'm not getting better that is his fault, I do everything they tell me to do. This man is considered the best lupus doc in the country and he is so apathetic I can't belive that I haven't gotten a new doc yet, I am just afraid the next one would be worse (the last one was).

I am so sorry for what you are going thru, I have heard there are people who actually try and talk doctor into diagnosing them with lupus b/c they think they will get attention and sympathy...those of us really suffering know what a joke that is! You get to be sick and in pain and people don't even seem to care or worse they seem annoyed by you.

Sorry I just vented so much...In the 6 years since i was diagnosed with lupus and fibromyalgia I have learned how to take care of myself above all else, only hang out with friends who are understanding and compassionate and how to say NO. Take care of yourself...don't waste your time tryng to explain t to others...your energy is so precious when your are sick like this, just find things and people that can support you in this. Be patient with your husband, get him to read some books...it took about a year for my husband to come around...later he admitted that it was so hard for him to see me suffer that he ended up being in denial for a long time.

Hang in there...and I highly suggest getting a good therapist like I did to sit down with each week and vent about how hard this is.

 
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Old 04-08-2008, 11:19 PM   #3
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Re: How do you deal with people that don't understand and/or don't care??

Our stories have a common thread. No one understands. Right now, I am going through a very difficult time with my husband because he doesn't understand why I am so tired and why I am laying down on the heating pad so much. I am so depressed. I can't exercise like I want, I can't partake in other family activities and social events I tend to bow out of. The reason for all of these is that I am in pain. I see a PMD once a month (or his nurse). I have cervical facet degeneration. I have had one facet joint injection that lasted a couple of months. It also cost me $600.00 (after insurance) of which I cannot afford right now. So I receive Norco 10/325 #60 1 twice a day. I also have Skelaxin and Ibuprofen. Well, it isn't working. I am in pain all day every day. I am making an appt. with the nurse for this week and I am going to finally spill my guts. I haven't been completly honest because I am afraid she would think I have a drug problem. So I don't tell her how much I hurt. I believe that the major depression and marital problems I have having are due to the constant pain I am in. But I hate the looks they give you when you go in and tell them that you are having more pain (especially after doing spring clean-up outside). I really just want to come out an ask if they think I am an addict...I want to see what there answer is. I am not addicted, I take my med when I am in pain (and I could probably take it more often but I don't) so addicted, no; physical dependence, maybe I know I am tired of hurting. I am 44 yrs. old what will it be like at 64?

Thanks for letting me vent.

DDM

 
Old 04-09-2008, 01:38 PM   #4
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lynn41 HB User
Re: How do you deal with people that don't understand and/or don't care??

I know exactly how you feel! I am 41 and keep asking myself - if I feel like this at 41, what will I be like at 61? I get those same looks - from people I work with, people that I thought were my friends, family, etc. I know I'm not the person I was 2 years ago, but very few people actually try to understand. I get so tired of plastering an "I'm fine" smile on my face. I guess there is no easy answer. One thing is for sure, finding an occasional friendly ear to listen helps so much!

 
Old 04-09-2008, 04:44 PM   #5
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lynn41 HB User
Re: How do you deal with people that don't understand and/or don't care??

Teddyjane:

It really is hard, isn't it? I used to think I was tough ... could face anything, but now I just feel like a train wreck. I thought I had several really good friends but it turns out they are just my friends when I'm happy, joking and laughing, but when I don't feel well, they just avoid me. I actually had to tell someone (that I thought was a good friend) that I don't have an infectious disease. I think what bothers me the most is that these "close" friends don't even try to understand.

I get the "it doesn't look like anything is wrong with you" response all the time. I go from being so angry at these people to feeling isolated and lonely. I'm NOT trying to use this as an excuse to not work, take care of my house, family, etc. I just don't have what it takes anymore to maintain everything.

The situation with my doctor has been incredibly frustrating too. After 17 months of going back and forth, I finally have a referral to a rheumatologist. I'm so anxious about that appointment - fearing that he will also blow me off.

THANK YOU for venting. It is very comforting for me to know that others out there are going through this same thing.

 
Old 04-17-2008, 07:23 AM   #6
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nlbr32 HB User
Re: How do you deal with people that don't understand and/or don't care??

I can relate as well, I was diagnosed in 2000. At first my husband was freaked out, and other family members were just confused by it. Trying to figure out how I could have it if no one else had it in the family. Now, most just seem to forget that i have it. My husband only seems to be concerned when I have a rash other than that I get the "its all in your head" remark. I can't say I hurt or I don't feel well because the reply is "you always say that, or , you never feel good". I then feel like I am always complaining or that maybe I am crazy. I am 32 years old and I feel like I'm 60 or something. My legs have been my biggest complaint, from my hips to my feet I hurt. Sometimes its so bad I don't want to move but my family is demanding and I can't stay down. I know now here I am on this site complaining.
How do you make others understand what is going on with you when you look healthy on the outside? My doctor is the same way as some of the ones I have heard about on here. He admits that he doesn't know anything about lupus but does bone scans, MRI's, and blood tests and tells me that he doesn't think I am active right now. The tests come back normal except a bone density test a few years ago showed some degeneration in my lower back. My blood shows a positive ANA and high leukocytes but the reply I get for that is "you have lupus, your tests will never be normal". They tell me to basically deal with it.

I am so frustrated. I can't keep a job since every time I try to work I get sick. Which is hard on my husband and 3 kids. So I have tried staying home and homeschooling them. Which for the most part has worked out, I can do it from the couch or my bed if its really bad. But even then sometimes I feel like I am not doing enough.

Sorry, to vent.

 
Old 04-17-2008, 10:19 AM   #7
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Re: How do you deal with people that don't understand and/or don't care??

Hi. Hard question---but WHY does your dr. say he knows nothing about lupus? Is he a rheumatologist? If he is, he ought to know something, quite a bit, in fact!

What med(s) are you taking? Do *you* think they're appropriate for all your problems? Does your bloodwork show high levels of any specific autoantibodies (meaning, other than ANA, which is only a threshold test)?
Have you read any lupus hardcovers, in which the gamut of available meds are described?

I take only Plaquenil but have pain nearly daily. I augment its anti-inflamamtory effect with OTC ibuprofen, taking more when rainy weather approaches & less otherwise.

Re: your bone density scan showing some spine degeneration. Did you ask if there are bone builders you can use at your age?

I felt so bad reading your post. I wish you had a much higher comfort level with your doctor, meaning I wish he was *earning* your respect. Bye for now, with best wishes. Sincerely, Vee

 
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