This post is related to one I wrote yesterday about answers…
I would LOVE to get some answers from a doctor (if you didn’t read my last post, long story short: I know I have Lupus, multiple doctors I have been to agree its probably Lupus, but none of them seem to be able/willing to give me an official diagnosis.)
Why is it then, that if doctors can’t seem to give advice there is, in turn, an unending supply of people; strangers, family, friends; who feel the need to give me advice on how to live my life and “fix myself” and inject their opinions about what my problem is?
Today is a bad day for me. My flare has lasted all day and actually caused me to black out due to dizziness. My husband was outside when it happened. He came in as I was coming to on the floor. He asked what I was doing and I told him I blacked out. He had the NERVE to say that it was probably just allergies!!
Side note: he is a one-upper. If I complain of a scratchy throat, he complains of a terrible migraine (then goes to play video games). If I complain that my bones are screaming in pain, he says his [insert whatever applicable body part] has been killing him for a week. I have gotten to the point where I rarely tell him how I’m feeling. I don’t say that I hurt EVERY minute of EVERY day because I know he wouldnt believe me or even attempt to understand.
Anyway, he said that the way I felt was my fault. Then he made a passive accusation that all I wanted to do was go to the hospital and get IV pain meds! He said everything from “you need to drink Gatorade because water won’t hydrate you” to “you need to stop taking naps during the day”. Ugh!
So, I have turned this discussion into another rant, but boy, I needed to get that out!
The original point was to ask, how do you deal with unwanted advice?
Unwanted advice, I learn is multifaceted, it comes from well meaning family, internet, support groups and sometimes our own thoughts. I accept advice as a suggestion on how to approach a situation, but, sometimes necessary just to smile and hear it through. You are lucky to have a husband that is minimizing it to make you feel comfortable and less worried. It sounds like he is just trying to assist.
For me, advice about my prognosis with Lupus is sought but rarely, told to me. I am going through a bad moment emotionally, and don't know if this disease will get the best of me. Despite trying to move on and just be me taking precautions, I don't have any other remedy. Some information I read states stress is a major trigger for Lupus to begin. So, I am racked with guilt and regret for taking on so much in life, being super independent, which now has ultimately impacted my life-span (I guess).
In short, your rant is in my heart too. But, as for your husband wishing it is allergies, that might be a blessing, he is ultimately trying to save your life in his mind, if that makes sense. I think its sweet.
Unwanted advice is what we must deal with, just smile and say thank you or just say "umm hmm". Consider the source and not the subtext message.
You are probably right. I have a hard time reading into subtext. They say women read too much into everything, but my mind is quite literal. I have to step away and think about what the person may actually mean; it’s hard for me to do in the moment of the conversation.
My husband may be well-meaning, I just wish he would take more time to understand Lupus and the baggage it comes with. Sometimes, all I need to hear is “I’m sorry you’re not feeling well” and then be able to move on. I don’t want him to pity me or feel like he needs to fix me, I just want him to try to understand when I’m not feeling well and be supportive.
Unshoreandscared said:
Unwanted advice, I learn is multifaceted, it comes from well meaning family, internet, support groups and sometimes our own thoughts. I accept advice as a suggestion on how to approach a situation, but, sometimes necessary just to smile and hear it through. You are lucky to have a husband that is minimizing it to make you feel comfortable and less worried. It sounds like he is just trying to assist.
For me, advice about my prognosis with Lupus is sought but rarely, told to me. I am going through a bad moment emotionally, and don't know if this disease will get the best of me. Despite trying to move on and just be me taking precautions, I don't have any other remedy. Some information I read states stress is a major trigger for Lupus to begin. So, I am racked with guilt and regret for taking on so much in life, being super independent, which now has ultimately impacted my life-span (I guess).
In short, your rant is in my heart too. But, as for your husband wishing it is allergies, that might be a blessing, he is ultimately trying to save your life in his mind, if that makes sense. I think its sweet.
Unwanted advice is what we must deal with, just smile and say thank you or just say "umm hmm". Consider the source and not the subtext message.
I get “You should just be more active!” all the time.
Compassion is key. Don't beat up yourself or your spouse, just stay in the moment. :). Trust me, I am talking to myself also.
SweetNovember said:
You are probably right. I have a hard time reading into subtext. They say women read too much into everything, but my mind is quite literal. I have to step away and think about what the person may actually mean; it's hard for me to do in the moment of the conversation.
My husband may be well-meaning, I just wish he would take more time to understand Lupus and the baggage it comes with. Sometimes, all I need to hear is "I'm sorry you're not feeling well" and then be able to move on. I don't want him to pity me or feel like he needs to fix me, I just want him to try to understand when I'm not feeling well and be supportive.
Unshoreandscared said:
Unwanted advice, I learn is multifaceted, it comes from well meaning family, internet, support groups and sometimes our own thoughts. I accept advice as a suggestion on how to approach a situation, but, sometimes necessary just to smile and hear it through. You are lucky to have a husband that is minimizing it to make you feel comfortable and less worried. It sounds like he is just trying to assist.
For me, advice about my prognosis with Lupus is sought but rarely, told to me. I am going through a bad moment emotionally, and don't know if this disease will get the best of me. Despite trying to move on and just be me taking precautions, I don't have any other remedy. Some information I read states stress is a major trigger for Lupus to begin. So, I am racked with guilt and regret for taking on so much in life, being super independent, which now has ultimately impacted my life-span (I guess).
In short, your rant is in my heart too. But, as for your husband wishing it is allergies, that might be a blessing, he is ultimately trying to save your life in his mind, if that makes sense. I think its sweet.
Unwanted advice is what we must deal with, just smile and say thank you or just say "umm hmm". Consider the source and not the subtext message.
Me too Catherine, from my daughter... She will say, "Mom, get up and do it yourself" I immediately feel defensive, then take a moment and understand her frustration seeing me in the bed quite some times is a difference from seeing me active and moving around the house and taking her places. So, when I ask her to do things, for me, "get a pepsi for me, or (water) LOL" she says "No, you need to get up and do it yourself", in that annoying 17 year old voice of reason. But, I had to take a step back and realize, she is getting ready to go to college and she is stressed about different deadlines, then dealing with a mother whom is newly diagnosed and moody and unsure what to do about my illness and she is SCARED!!
So, I don't get too offended with her, it saddens me to no extent, she is under a lot of pressure. So, I understand and still address the inappropriate yelling etc, teenager behavior, but I try to understand her motivation for yelling.
Catharine said:
I get "You should just be more active!" all the time.
I get unwanted avice from so many people. Most of them have no idea what is it to live with a chronic illness that causes severe pain on a daily basis. I've heard everything from "You need to stop all medications" "You need to go to my chiropractor", "You need to take more vitamins and try these herbs" to "You need to boost your immune system." Um, if I boost my immune system, my auto-immune diseases will attack my body even more, hello! Anyway, I try to be nice and just say "thank you" but if they continue, I politely say "My disease is not your (or your friends, or your who-ever's) disease, it is my disease. I'm happy that you have foun what works for you, and hopefully I will too." And then I walk away. People have called me rude, but really, rude would be saying what I really want to say. :)
It is so hard to be patient now. I used to have the patience of Mother Teresa, but as this thing goes along, it gets more and more difficult. My head hurts, my eyes hurt, my body hurts and I have the desire to be on the move. I'm not ready to rock in a chair or lay in a bed, yet I do. It's so conflicting inside my head. I especially have to understand that with my daughter who is a new mom and recently diagnosed with Fibromyalgia. It seems, she has the same conflicting talk inside her head! It's very hard to have a low key issue with her now. I raised her to stick up for herself and not take crap. I now have to weigh my words very carefully and not give her crap! lol
BRAVO Lupusmomof2...LOVE YOUR CANDOR!!!
lupusmomof2 said:
I get unwanted avice from so many people. Most of them have no idea what is it to live with a chronic illness that causes severe pain on a daily basis. I've heard everything from "You need to stop all medications" "You need to go to my chiropractor", "You need to take more vitamins and try these herbs" to "You need to boost your immune system." Um, if I boost my immune system, my auto-immune diseases will attack my body even more, hello! Anyway, I try to be nice and just say "thank you" but if they continue, I politely say "My disease is not your (or your friends, or your who-ever's) disease, it is my disease. I'm happy that you have foun what works for you, and hopefully I will too." And then I walk away. People have called me rude, but really, rude would be saying what I really want to say. :)
Thank you. It took me a lot of years to grow a backbone, but once i did, I found out I really liked having it! And using it. My goal is to make sure my teenage daughter and teenage son use their backbones, and speak their minds....with as much politeness as possible. It's unfortunate that there are people who won't just let it rest when you try to be polite.
Unshoreandscared said:
BRAVO Lupusmomof2...LOVE YOUR CANDOR!!!
lupusmomof2 said:
I get unwanted avice from so many people. Most of them have no idea what is it to live with a chronic illness that causes severe pain on a daily basis. I've heard everything from "You need to stop all medications" "You need to go to my chiropractor", "You need to take more vitamins and try these herbs" to "You need to boost your immune system." Um, if I boost my immune system, my auto-immune diseases will attack my body even more, hello! Anyway, I try to be nice and just say "thank you" but if they continue, I politely say "My disease is not your (or your friends, or your who-ever's) disease, it is my disease. I'm happy that you have foun what works for you, and hopefully I will too." And then I walk away. People have called me rude, but really, rude would be saying what I really want to say. :)
Brilliant response! I’m usually patient and passive (sometimes to a fault) on the outside and just say something like “thanks, I may try that!” or just “mmhmm” if I can’t find my manners-lol. The problem I face isn’t so much how I deal with others, but more so how I internalize everything and stress over it. Stress is definitely not good for the soul and mine seems to be getting worse. 
lupusmomof2 said:
I get unwanted avice from so many people. Most of them have no idea what is it to live with a chronic illness that causes severe pain on a daily basis. I’ve heard everything from “You need to stop all medications” “You need to go to my chiropractor”, “You need to take more vitamins and try these herbs” to “You need to boost your immune system.” Um, if I boost my immune system, my auto-immune diseases will attack my body even more, hello! Anyway, I try to be nice and just say “thank you” but if they continue, I politely say “My disease is not your (or your friends, or your who-ever’s) disease, it is my disease. I’m happy that you have foun what works for you, and hopefully I will too.” And then I walk away. People have called me rude, but really, rude would be saying what I really want to say. 
Same here! My best friend always makes remarks about how I’ve always had the patience of a saint, but it’s getting more and more difficult to maintain - especially with all the other stressors in my life.
My doctor said she wanted to put me on anxiety meds. I refused at first but I think I may reconsider. Like I said, it still takes a lot for me to show my anxiety on the outside, but the way I internalize it is detrimental to my health.
Kadeeeee said:
It is so hard to be patient now. I used to have the patience of Mother Teresa, but as this thing goes along, it gets more and more difficult. My head hurts, my eyes hurt, my body hurts and I have the desire to be on the move. I'm not ready to rock in a chair or lay in a bed, yet I do. It's so conflicting inside my head. I especially have to understand that with my daughter who is a new mom and recently diagnosed with Fibromyalgia. It seems, she has the same conflicting talk inside her head! It's very hard to have a low key issue with her now. I raised her to stick up for herself and not take crap. I now have to weigh my words very carefully and not give her crap! lol
Stress is not good for anything!! I didn't understand at 1st when I would read that stress made lupus worse....but it's so true!! And I stress a lot, mostly about how my health affects my kids, and raising 2 kids on disability is difficult, especially in Alaska where it is so expensive to live. I don't think I will ever be able to fully stop stressing, it's just part of my nature!
Seems your husband is scared silly of lupus, and is in denial, denying anything you might be feeling and saying he's had it worse than you, and saying its probably allergies, in order to minimize the lupus in his own mind. I had to talk to a counselor once with my hubby when I first got it, or my marriage would have been over. It lasted for 15 years after we talked to that counselor, THEN he walked out on our whole family with 3 hours notice, and I had NO CLUE. We had never fought. I thought we had a storybook marriage. So anyway, it CAN be saved, if you both want to save it.
Telling others these things are just human nature. I also just say "thank you" and if they press it, and tell me so and so was cured of lupus with this, and I sell this product that is supposed to cure lupus through a multi-level marketing plan" I have to tell them that each person with lupus is very different, and I can't afford their product, and I can't play guinea pig on myself for each person that offers a product, becaue EVERY TIME, it is something that makes people healthier and stronger by increasing their immune system, and as someone mentioned before, that would kill us. That's why we can't even be in the sun, it increases the immune system. Unfortunately, the social part of this disease is harder for me than the physical, so I have become somewhat of a hermit.
Ann A. said: "Take what you can use and leave the rest."
PERFECT advice, even though we sure get tired of unwanted advice! 
I so wish all of us on the site lived close together. We could have an evening social club.
I believe we may need therapy before long. If it is that he is simply concerned, I truly appreciate that however, I am concerned for myself and I KNOW it isn’t allergies. Lol We just need to be on the same page.
I’m SO sorry you had to deal with that with your husband! That is such a scary possibility that comes with chronic illnesses.
Sheila W. said:
Seems your husband is scared silly of lupus, and is in denial, denying anything you might be feeling and saying he’s had it worse than you, and saying its probably allergies, in order to minimize the lupus in his own mind. I had to talk to a counselor once with my hubby when I first got it, or my marriage would have been over. It lasted for 15 years after we talked to that counselor, THEN he walked out on our whole family with 3 hours notice, and I had NO CLUE. We had never fought. I thought we had a storybook marriage. So anyway, it CAN be saved, if you both want to save it.
Telling others these things are just human nature. I also just say “thank you” and if they press it, and tell me so and so was cured of lupus with this, and I sell this product that is supposed to cure lupus through a multi-level marketing plan" I have to tell them that each person with lupus is very different, and I can’t afford their product, and I can’t play guinea pig on myself for each person that offers a product, becaue EVERY TIME, it is something that makes people healthier and stronger by increasing their immune system, and as someone mentioned before, that would kill us. That’s why we can’t even be in the sun, it increases the immune system. Unfortunately, the social part of this disease is harder for me than the physical, so I have become somewhat of a hermit.
I have heard that as well-I work with CPS and have several clients in 12-Step Programs. It is a great slogan and totally applicable!
Ann A. said:
"Take what you can use and leave the rest."
The saying above is one of the many slogans from 12 Step Programs that have helped me to survive with lupus for the past 45 years. Of course, I had never heard the slogan until the 1970s when I worked evaluating the effectiveness of substance abuse interventions. But it is how I try to deal with advice, especially from people that I know mean well. Every now and then, even the most unlikely people say something that I find useful. So, I try very hard to pay attention to that little bit and to just ignore the rest.
I was just thinking “I could really use a mantra”!
Ann A. said:
I use a lot of 12-step slogans to deal with lupus. Whenever I am feeling overwhelmed and confused about what I should do next, my brain will pipe up with "First things First." I am constantly telling myself to "Keep it Simple Sweetheart (KISS). And the Serenity Prayer is essential to my continued existence. I use the short version of the prayer as my mantra when i meditate.
I must have married your husbands twin!
Cassie
I love that! Too true!
Sheila W. said:
Ann A. said: “Take what you can use and leave the rest.”
PERFECT advice, even though we sure get tired of unwanted advice!