Those with chronic illness: How do you deal with..

[shanvan]

people who give you unhelpful, unsolicited advice about your health? I checked emails this morning and found an email from a friend that has me extremely annoyed.

 

Backstory: Her daughter teaches my Dc piano and I cancelled the lesson this week b/c Ds is sick (it seems like it has turned into a sinus infection) and I got what he has. I was thinking I was headed toward an infection too, but I might have dodged it this time. The lesson would have been completely unproductive and I also wanted to protect her daughter from getting whatever we have since it already made its way through Dd & Dh. And her daughter was having her wisdom teeth out the day after the lesson--not a good time to get sick.

 

So the email says she has been thinking about me. Then it asks me a bunch of questions about why I think I don't feel well so often. It goes on to blame it on the dogs then suggests that perhaps I need to clean more frequently and gives specific cleaning techniques I might think of trying, along with the idea that I might need to wear a mask while cleaning.

 

The whole thing feels like a kick when I'm down. I'm doing my best to stay healthy right now and avoid a sinus infection (which I am prone to) and I'm having a flare with fibro pain and not sleeping well.....also trying to finish up school plans and organizing.

 

Oh, I have been to this woman's house many times and she is not following the cleaning advice she gave me. She's busy, she tutors and is going back to school, so has no time to clean and I can relate.

 

Furthermore, her Dd has come here to give lessons when she was sick before and given her cold to our family.

 

I'm so tempted to send this lady a bunch of articles about fibromyalgia to read, or copy and paste an explanation of viruses, colds, and sinus infections and how they work. The last time I was sick (besides fibro symptoms) was in the spring when my allergies got so bad that I developed a sinus infection. I can't remember when before that. Probably last fall when her Dd brought us a cold.

 

Besides the fibro, I am checked by my doctor yearly for lupus, Rheumatoid arthritis, etc, because there is an indication that something more than fibro could be going on. I have done tons of research on my condition and had some horrible experiences with medications. I've finally settled on what works (mostly) for me, but I'm never going to be as healthy as I was in the past. I don't need someone emailing me cleaning suggestions!

 

I'm tempted to email her something to make sure she doesn't send me any more advice in the future. This is the 2nd time she has done this.

 

But, I know I should just let it go......but does anyone here actually deal with a person like this head on in the hopes of, lets say 'educating' them?

 

Thanks for letting me vent.

 

[Heather in Neverland]

No. I just ignore them.

 

My mom has fibromyalgia and the problem is so many people don't think it is even REAL. :glare:

 

I have chronic migraines and chronic insomnia. No one cares unless you have cancer. I have a terrible headache literally almost every day of my life and I haven't had a full night's sleep in almost a decade. I don't even talk about it anymore because I either get unhelpful advice (you just need to drink more water! Ohhhhhh, is that all??? Gee, I wish someone would have told me that 15 years ago!) or they don't believe you like you are a hypochondriac. So I just suffer in silence... And take meds.

 

 

 

.

[Tee]

I've found that for my own peace and sanity, the best response to those sorts of things is along the lines of "thanks, I'll think about that." And nothing more.

 

You don't have to say what you will think about that.

[IsabelC]

:iagree:

 

Just say thanks for the advice, or thanks for thinking about me, and leave it at that.

 

Sorry you have to deal with unsolicited advice and judgement. :grouphug:

[Impish]

Oh Heavens.

 

I've been overloaded w/'helpful' advice.

 

Everything from being told that obviously my faith isn't strong enough, b/c she's been praying for me, and has her whole church praying for me, so I should be better by now...must be my faith that's the problem :glare: to how I just need to push through it, to it can't be as bad as I say, take this health supplement, I know someone that had a bad arm too...

 

Honestly, I ignore, ignore, ignore, then explode when it gets to the breaking point. I've very firmly stated, time and again, "I'm under the care of one of the best specialists in the country. He knows what he's doing." and then, to grave disappointment, refuse to discuss what treatment I'm getting, etc. Nobody's biz but mine.

[G5052]

We've been dealing with this sort of thing for a long time. I have a family member who has been written up in the medical journals because his situation is so unusual and difficult. We've seen some of the top specialists and alternative medicine folks in the *world* and been very diligent at running down every possibility.

 

Honestly I'm beyond believing that more than a handful of people will ever understand our situation. I frankly don't talk about it much anymore because I'm tired of explaining, and I want to focus on other areas of life. We still have people doing things like giving us little packets of herbs and suggesting that he go to their XXX (fill in the blank). As if we hadn't tried everything possible and as if that would help.

 

If someone offers advice, say "thank you, I appreciate your concern" and move on. If they get aggressive, I tell them, "Thank you, but I need to ask you to not give me any more advice. You are not a medical professional, and I need to focus on what my specialists tell me."

[elegantlion]

Don't give her anything to help her continue the conversation.

[ElaineJ]

This is so hard. I have had fibromyalgia for 12 years now, so I can understand your situation a little bit. For me, I just remind myself that people care and that they are trying to be helpful. Most of them haven't been through a similar experience themselves, so they just don't understand all of the emotions that accompany a chronic illness nor do they realize that they are the millionth person to hand over some advice. Some of the advice I get comes from people who have actually had some similar symptoms and found something they felt really helped them. I have tried most of these with a sense of hope, only to be disappointed with the lack of change to my situation in the end. This is so depressing that I've quit trying things for the most part. I just tell people, "Thanks!" and move on. It is hard and lonely, but unless you are talking to a really good friend I don't think you can expect them to understand. I'm sorry fro the pain you are going through. :grouphug:

Elaine

[Jean in Newcastle]

I agree with all the advice of PPs. If you wanted to give a one-line answer when you see her of "I have a chronic illness that I'm managing with my doctor" you can, but I wouldn't try to go into an explanation of fibro, auto-immune problems etc. When pushed, sometimes I say that my chronic illness is "like bad arthritis in how I feel and makes it easier for me to get sick". I say it that way because bad arthritis pain is something that even people who don't have it can understand and relate to. And they know people with arthritis who don't look sick, just like those of us with fibro don't really look sick. I tack on the last part to cover the auto-immune aspect. But honestly, this woman stepped over a boundary for me in making assumptions about your hygiene and the cleanliness of your home.

[dbmamaz]

haha i tense up and feel my blood pressure boiling! then i make a big sigh and PUNCH the delete button, and wish it had been a more satisfying feeling.

 

if she continues to give give unsolicited advice, i would try to say 'I appreciate your concern but I am really not looking for advice'. Most people, i think, on some level know that often we try to 'fix' things by giving advice, when really all we should be giving is sympathy . .and most of us forget that a lot . ..

[Lang Syne Boardie]

Don't give her anything to help her continue the conversation.

 

:iagree: Unfortunately I have dozens of people in my life who think I'm standoffish and unsociable because they only reason they get for my lack of participation is, "No thanks, not this time." Because they have taught me that if I accept sometimes but bow out due to ill health at other times I will be bombarded with how to not have lupus. For weeks, months, or years, all unsolicited, just because I said I had too much joint pain to attend the 5 mile hike that day.

 

So now the only reason they get is, "No thanks, I can't come this time." If they ask, "Why not," I just say because I can't, thanks again for inviting me but I really can't.

[KidsHappen]

Sarcasm.

Edited September 3, 2012 by KidsHappen

[shanvan]

No. I just ignore them.

 

My mom has fibromyalgia and the problem is so many people don't think it is even REAL. :glare:

 

I have chronic migraines and chronic insomnia. No one cares unless you have cancer. I have a terrible headache literally almost every day of my life and I haven't had a full night's sleep in almost a decade. I don't even talk about it anymore because I either get unhelpful advice (you just need to drink more water! Ohhhhhh, is that all??? Gee, I wish someone would have told me that 15 years ago!) or they don't believe you like you are a hypochondriac. So I just suffer in silence... And take meds.

 

Oh, yeah. I've had the hypochodriac reaction from people before. And I can't believe the water cure didn't work for you. :001_huh: :grouphug: I'm sorry you are dealing with this. I get migraines at times and can't imagine dealing with them regularly. :grouphug: No advice from me. Take care of yourself the best way you know how.

 

.

 

Oh Heavens.

 

I've been overloaded w/'helpful' advice.

 

Everything from being told that obviously my faith isn't strong enough, b/c she's been praying for me, and has her whole church praying for me, so I should be better by now...must be my faith that's the problem :glare: to how I just need to push through it, to it can't be as bad as I say, take this health supplement, I know someone that had a bad arm too...

 

Honestly, I ignore, ignore, ignore, then explode when it gets to the breaking point. I've very firmly stated, time and again, "I'm under the care of one of the best specialists in the country. He knows what he's doing." and then, to grave disappointment, refuse to discuss what treatment I'm getting, etc. Nobody's biz but mine.

 

Impish,

 

I've read some of your posts about your condition. You do an amazing job of handling it. I can't even believe anyone would think to recommend a supplement as the answer! And, you're right on target about it being nobody's biz. I've had all the advice you mention. Yep, if only my faith were stronger or I went to the correct church ---that came from the 'Christian' doctor I tried.

 

And, yes, I have done some minor exploding. Most recently when a family member suggested I seem to be tired a lot and maybe I should go see my doctor. :confused: My dreadfully sarcastic tongue came into play after that! He hasn't made any more suggestions, and he admitted he forgot about my fibro and all the tests and treatments and doctors.

 

I'm trying not to use the explosion method. I like your firm response idea and might use a variation of it in this case. Thanks.

[shanvan]

:iagree: Unfortunately I have dozens of people in my life who think I'm standoffish and unsociable because they only reason they get for my lack of participation is, "No thanks, not this time." Because they have taught me that if I accept sometimes but bow out due to ill health at other times I will be bombarded with how to not have lupus. For weeks, months, or years, all unsolicited, just because I said I had too much joint pain to attend the 5 mile hike that day.

 

So now the only reason they get is, "No thanks, I can't come this time." If they ask, "Why not," I just say because I can't, thanks again for inviting me but I really can't.

 

Tibbie,

 

I have read quite a few of your posts, but didn't realize you have lupus. I am almost at the point you mention above of just saying no to everything, and for a similar reason. All I can say about the 5 mile hike is "I'm sure if you did it you'd feel better afterward." :001_huh: Have you gotten that one yet? I got a version of this earlier this week---but I wasn't facing a 5 mile walk. I hope your joint pain is a little better now. :grouphug:

[shanvan]

I agree with all the advice of PPs. If you wanted to give a one-line answer when you see her of "I have a chronic illness that I'm managing with my doctor" you can, but I wouldn't try to go into an explanation of fibro, auto-immune problems etc. When pushed, sometimes I say that my chronic illness is "like bad arthritis in how I feel and makes it easier for me to get sick". I say it that way because bad arthritis pain is something that even people who don't have it can understand and relate to. And they know people with arthritis who don't look sick, just like those of us with fibro don't really look sick. I tack on the last part to cover the auto-immune aspect. But honestly, this woman stepped over a boundary for me in making assumptions about your hygiene and the cleanliness of your home.

 

Yep. That's what gets to me most about her email. I'm doing the best I can, sometimes my best is better than it is at other times. That's just the way it is.

 

Chronic illness aside, who gives friends unsolicited cleaning advice?

[Lang Syne Boardie]

Tibbie,

 

I have read quite a few of your posts, but didn't realize you have lupus. I am almost at the point you mention above of just saying no to everything, and for a similar reason. All I can say about the 5 mile hike is "I'm sure if you did it you'd feel better afterward." :001_huh: Have you gotten that one yet? I got a version of this earlier this week---but I wasn't facing a 5 mile walk. I hope your joint pain is a little better now. :grouphug:

 

Thank you! I hope you are soon feeling well, too.

 

About the bolded, it would be hard to hold my tongue if I heard that. Because actually, I wouldn't feel better, I'd be in bed for a week. LOL

 

I don't know. I agree with KidsHappen, sometimes you have to just tell people that you know better about your own health than they do. I think all these folks who try to force us to talk about it are actually making it worse. I don't know about you, but I feel the best when I am just doing as many normal things as possible and blending in with everyone else. I don't like to think about it long enough to explain it to strangers.

[Kathryn]

I was diagnosed 16 years ago with fibromyalgia, CFS, and neurally mediated hypotension. I'm living my life at a normal-for-me level and I don't explain or apologize to anyone about it. I don't think I've told anyone that I've met in the past decade about the diagnosis beyond "immune system problems", and it's precisely because FM and CFS are so misunderstood. I do have to bow out of things sometimes, but I just say that we're sick. As for unsolicited advice, I'd say a simple thank you, or "thank you, my doctor and I have discussed how best to deal with my health problems."

[TranquilMind]

Yep. That's what gets to me most about her email. I'm doing the best I can, sometimes my best is better than it is at other times. That's just the way it is.

 

Chronic illness aside, who gives friends unsolicited cleaning advice?

 

Well, my question is whether there could be any truth to what she says or has read? I will listen to advice that comes my way, and decide if it has any applicability in my case. Maybe not at all. But just maybe there might be something there I am overlooking.

 

I don't know much about dogs and sinus infections but I'd sure be researching if there is any connection. Something simple can sometimes resolve things. It's always worth a look.

 

BTW, I used to have sinus infections at least twice a year, requiring long runs of antibiotics. Since I began taking a few drops of colloidal silver in the back of my throat whenever I felt one coming on, it resolved within 24 hours every time. I haven't had an antibiotic in maybe 15 years for that purpose.

 

So... I will always listen to suggestions. My midwife told me about that one.

[Kathryn]

Thank you! I hope you are soon feeling well, too.

 

About the bolded, it would be hard to hold my tongue if I heard that. Because actually, I wouldn't feel better, I'd be in bed for a week. LOL

 

I don't know. I agree with KidsHappen, sometimes you have to just tell people that you know better about your own health than they do. I think all these folks who try to force us to talk about it are actually making it worse. I don't know about you, but I feel the best when I am just doing as many normal things as possible and blending in with everyone else. I don't like to think about it long enough to explain it to strangers.

 

I SO agree with this. As I said, I function at a normal-for-me level. I don't like to focus on why that's different than others. Once I accepted and found my pace, I did much better health-wise than when I tried to push myself to fit into what others thought I should be able to do.

[ChristyB in TN]

It would be an enormous amount of fun to return the favor. Could she use dieting advice and a bunch of articles? Maybe she needs parenting tips? Maybe just a lot of info on the benefits of: soy, protein, omega 3 supplements, quality sleep, frequent colonoscopies, frequent mammograms, retin a cream, cognitive therapy,or fiber. Does she look like she needs a college degree? Maybe some pamphlets on different online degree programs or a link to your local community college. Does she get a yearly pap smear? Maybe you could ask. :D

[FaithManor]

Oh Heavens.

 

Honestly, I ignore, ignore, ignore, then explode when it gets to the breaking point. I've very firmly stated, time and again, "I'm under the care of one of the best specialists in the country. He knows what he's doing." and then, to grave disappointment, refuse to discuss what treatment I'm getting, etc. Nobody's biz but mine.

 

 

 

Repeat, repeat, repeat. What IMP says is right.

 

I'm slowly learning this myself. I am not chronically ill, but I've had some digestive issues and now have to be gluten free and while not totally grain free, pretty close...rice is the only grain I can tolerate. Of course, that means that by in large, I cannot eat what other people cook because the vast majority of items has a sauce of some kind on it meaning I risk MSG or wheat starch, corn starch, etc. Boy, you talk about offending people. Apparently it is a real affront to their dignity that I can't eat their food. :glare: This then results in either being told, "There is no such thing as Gluten Intolerance...everyone can eat wheat because God sent manna to the Israelites in the desert." Passover and Lord's Supper are thrown up in my face (paying this afternoon for taking the Lord's Supper a church this morning since GLUTEN free bread is never provided and I feel conspicuous for taking only wine and not bread so I get to be miserable for several hors). Or another favorite, "If you just eat more of it, you'd eventually become immune!" My personal favorite, "This kind of thing is all psychological. If you take anti-depressants, you'll be able to eat anything you want." :banghead:

 

So, I'm slowly learning the same response as Imp. "I'm being taken care of by an excellent doctor and following his advice. Thank you." Repeat often enough that the naysayers finally give up and go away.

 

I'm learning to be MUCH more private about any details concerning my health. I've found that unfortunately, the more people know, the less helpful they become and the great their busybody tendancies. Privacy is a good thing.

 

:grouphug::grouphug: Faith

[shanvan]

Well, my question is whether there could be any truth to what she says or has read? I will listen to advice that comes my way, and decide if it has any applicability in my case. Maybe not at all. But just maybe there might be something there I am overlooking.

 

I don't know much about dogs and sinus infections but I'd sure be researching if there is any connection. Something simple can sometimes resolve things. It's always worth a look.

 

BTW, I used to have sinus infections at least twice a year, requiring long runs of antibiotics. Since I began taking a few drops of colloidal silver in the back of my throat whenever I felt one coming on, it resolved within 24 hours every time. I haven't had an antibiotic in maybe 15 years for that purpose.

 

So... I will always listen to suggestions. My midwife told me about that one.

 

No. What she suggests has no validity at all for me. Yes, I do listen to some suggestions, especially from a friend who has similar issues to mine.

[EmmaNadine]

Yeah, I have fibro, chronic daily headache, insomnia and depression. I have tried everything.

 

I've gotten to the point where I just say, "Thanks, I'll think about that" and keep going on with my life.

 

Sometimes I think having fibro or CFS or lupus or other chronic illnesses would be easier if we looked sicker. But then, when my SIL was going through chemotherapy, she got lots of a$$vice, too.

 

So, gentle hugs, because I know how you feel, and I hope your flareup goes away soon.

[Mommyfaithe]

I just don't bother to respond or explain. Even my dh doesn't really want to hear it....I think sometimes, when people care...they just want to "fix" it with some little thing, and they come off sounding like they think you are a moron....sigh. I just take it and try to give the benefit of the doubt that the person is truly trying to help....

 

Thing is, I look very healthy, I work out a lot, I watch my diet, I work really hard to maintain a level of normalcy. Just let it go....and :grouphug::grouphug::grouphug:

Fibro really s*cks!

[Luckymama]

This then results in either being told, "There is no such thing as Gluten Intolerance...everyone can eat wheat because God sent manna to the Israelites in the desert." Passover and Lord's Supper are thrown up in my face (paying this afternoon for taking the Lord's Supper a church this morning since GLUTEN free bread is never provided and I feel conspicuous for taking only wine and not bread so I get to be miserable for several hors).

 

Seriously?!?! Holy cow...

[mom2samlibby]

You could share this with her. http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[Annie G]

Hit the delete button. If she asks why you never responded to her email, just look at her and say, "oh, you were being serious?" Because of course a chronic condition can't be dusted or mopped away and even an idiot knows that.

[Lacie]

My go to comeback is "thanks I'll look into that". Some comments are helpful and I do research them, others I just vent to my mil about. If she agrees that they are crazy, then I still checked it out... If she thinks they might be good, I research it.

 

 

I have fibro, chronic back/neck pain, scoliosis, daily headaches, insomnia, and reflux. My good friends see these as real issues, not everyone does.

 

I'm sorry she feels like she can comment about your life like that. :grouphug:

[Sara in AZ]

People are so misinformed about diabetes in general, and Type 1 in particular, which my oldest DD has. If it's someone I'll never see again I just smile and nod, "Sure, I'll have to try some cinnamon!" But if it's someone I have a relationship with and see regularly I try to educate them.

 

This woman has gone over the top, and I think I'd have to tell her politely that I have things under control. You've gotten lot's of great suggestions.

[cin]

No. I just ignore them.

 

My mom has fibromyalgia and the problem is so many people don't think it is even REAL. :glare:

 

I have chronic migraines and chronic insomnia. No one cares unless you have cancer. I have a terrible headache literally almost every day of my life and I haven't had a full night's sleep in almost a decade. I don't even talk about it anymore because I either get unhelpful advice (you just need to drink more water! Ohhhhhh, is that all??? Gee, I wish someone would have told me that 15 years ago!) or they don't believe you like you are a hypochondriac. So I just suffer in silence... And take meds.

 

 

 

.

 

 

:iagree::iagree:

 

And DH wonders why I was happy to see my spine X-Ray. The bottom of my spine goes like this: \ PROOF! I am NOT crazy! My back really IS mucked up!!!!! :glare::glare:

 

Please note, DH NEVER doubted me. Which is why he wondered why I was so thrilled.

[Mergath]

I just don't tell people I have epilepsy, PCOS, and OCD unless they really, really need to know. With the epilepsy especially, because more than once I have been told that having epilepsy means I am actually possessed by demons. I wish I was kidding. :glare:

[KungFuPanda]

I once had someone express their concern over all the sodium in my son's 6" Subway sandwich. Really!?!? The kid has muscular dystrophy and lunch is something he can do just like the other kids at co-op. I'm not serving him salami sandwiches every day at home!

 

If she really wanted to be helpful she could've taught her child to stop blocking the wheelchair ramp with her giant, exploding backpack!

[ThisIsTheDay]

Dh deals with this. Most of the unhelpful comments and neverending unsolicited medical advice come from his mom. :glare: When pushed, he'll hang up on her.

 

Other people have suggested things to me, and I'll respond, "Thanks!" If I got an email, I'd delete it, unanswered. We've received books. "Thanks!"

 

What I hate is when people ask, "How's your dh feeling?" Honestly? About as crappy as when you asked last week, but I usually say, "Fine!" I've recently learned to say, very graciously, "About the same," and then change the conversation.

 

Vague works at our house. The last thing he wants is any kind of comment or acknowledgement of his medical state.

[hsmom2011]

n/m

[fourcatmom]

I will PM someone with my question instead of posting it here. Thanks!

Edited September 3, 2012 by fourcatmom

[Jilly6]

I just don't tell people I have epilepsy, PCOS, and OCD unless they really, really need to know. With the epilepsy especially, because more than once I have been told that having epilepsy means I am actually possessed by demons. I wish I was kidding. :glare:

 

Yep, I have nocturnal epilepsy which basically means I have seizures while I sleep. You can't see the condition so people think I am faking it! My mom is the worst offender stating " you just need to reduce the stress in your life,"

 

Really? stress causes my seizures?? I have a hard time going to functions because I never know how I will feel. My extended family is always giving me a hard time about it.

 

I have gotten the "your faith needs to be stronger" or "you must not be a true Christian to have seizures". it is maddening to me that people in the church think this is an okay statement to make...

 

I just wish people would stop and think before offering unsolicited advice about a medical issue they have no clue about!

Lol, rant over now.

[Mommyfaithe]

I just don't tell people I have epilepsy, PCOS, and OCD unless they really, really need to know. With the epilepsy especially, because more than once I have been told that having epilepsy means I am actually possessed by demons. I wish I was kidding. :glare:

 

Idiots.

[shanvan]

I just don't tell people I have epilepsy, PCOS, and OCD unless they really, really need to know. With the epilepsy especially, because more than once I have been told that having epilepsy means I am actually possessed by demons. I wish I was kidding. :glare:

 

Wow. I'm so sorry. I wish you were kidding too. I agree with Faithe--Idiots.

[shanvan]

Repeat, repeat, repeat. What IMP says is right.

 

I'm slowly learning this myself. I am not chronically ill, but I've had some digestive issues and now have to be gluten free and while not totally grain free, pretty close...rice is the only grain I can tolerate. Of course, that means that by in large, I cannot eat what other people cook because the vast majority of items has a sauce of some kind on it meaning I risk MSG or wheat starch, corn starch, etc. Boy, you talk about offending people. Apparently it is a real affront to their dignity that I can't eat their food. :glare: This then results in either being told, "There is no such thing as Gluten Intolerance...everyone can eat wheat because God sent manna to the Israelites in the desert." Passover and Lord's Supper are thrown up in my face (paying this afternoon for taking the Lord's Supper a church this morning since GLUTEN free bread is never provided and I feel conspicuous for taking only wine and not bread so I get to be miserable for several hors). Or another favorite, "If you just eat more of it, you'd eventually become immune!" My personal favorite, "This kind of thing is all psychological. If you take anti-depressants, you'll be able to eat anything you want." :banghead:

 

So, I'm slowly learning the same response as Imp. "I'm being taken care of by an excellent doctor and following his advice. Thank you." Repeat often enough that the naysayers finally give up and go away.

 

I'm learning to be MUCH more private about any details concerning my health. I've found that unfortunately, the more people know, the less helpful they become and the great their busybody tendancies. Privacy is a good thing.

 

:grouphug::grouphug: Faith

 

That's such a lot of helpful info. :glare: I would think you would be cured by now. When we were on vacation recently at a shore we had the worst time finding anywhere for Dd to eat b/c of her seafood allergy. After 2 hrs of trying to figure out where to go we ended up at Pizza hut. We then talked about how much more difficult it would be if we were dealing with Gluten intolerance. :grouphug:

[MariannNOVA]

:iagree:

 

Just say thanks for the advice, or thanks for thinking about me, and leave it at that.

 

Sorry you have to deal with unsolicited advice and judgement. :grouphug:

 

When my dd32 was so ill I thought she was going to die and we had no idea what was going on, my sister (the M.D.) told me it was all in dd's head and she needed to get a job and start putting 'food on the table.'

 

8 years later, we learned it is Ehlers-Danlos.

 

And, yes, my sister is one of those people who thinks that fibro is a catch all diagnosis for: there's nothing wrong with you.:glare:

[mims]

My daughter has had a non stop headache as long as she can remember. It varies from a 3 to a 8 out of 10. Many, many people have prayed for her and I know a number that pray for her daily. Some are so excited when they have heard some new possibility but it is because they love and care. I've really tried to remember where their heart is rather than think we tried that 3 years ago! Occasionally some advise has been worth checking out. One benefit of trying to be gracious is people have really surrounded and cheered for my daughter. She is doing an 8 month internship at an orphanage in Africa and they have supported her in so many ways. They are thrilled to see her push through and succeed in life.

[cin]

I once had someone express their concern over all the sodium in my son's 6" Subway sandwich. Really!?!? The kid has muscular dystrophy and lunch is something he can do just like the other kids at co-op. I'm not serving him salami sandwiches every day at home!

 

If she really wanted to be helpful she could've taught her child to stop blocking the wheelchair ramp with her giant, exploding backpack!

 

This reminds me of an incident several years ago. We were at Target eating lunch (underweight, previously mal-nourshed child LOVED their hotdogs...) And we were eating a hotdog, with the bun. This little girl at the next table was with her denim skirted, birkenstock loving mom. She looked at Piper and said....'white bread isn't good for you' while munching on her nitrate filled hot-dog, and guzzling her hi-c fruit punch. :001_rolleyes: I don't remember what I said, but I do know it wasn't what I was thinking.

 

Nowadays, after being around the block a few times, I realize that that mom might be there for the same reason I was. We do NOT eat hotdogs, except for the organic ones. But as mentioned above, if Piper would eat it, we would feed it to her. At 11, she is still a horribly picky eater. but at least now she's not malnourished and underwe.....well, she is still underweight, but she functions fine, so the doctor isn't worried about it.

 

(Another thread, but I *DO* love my pediatrician. Some people are just skinny. If she's not lethargic and tired after riding her bike for 5 minutes, then she's fine! And well she's Asian, so she's going to be underweight according to the Americans, which are all overweight. :001_wub: )

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I just don't tell people I have epilepsy, PCOS, and OCD unless they really, really need to know. With the epilepsy especially, because more than once I have been told that having epilepsy means I am actually possessed by demons. I wish I was kidding. :glare:

 

I KNOW you aren't kidding. I use to hear that stuff re: depression and anxiety. I always thought the person telling me was the one with the problems. But now that I have a child with depression and anxiety, who was diagnosed at *8* yrs old, I KNOW that those people are crazy.

 

Depression and anxiety CAN be 'spiritual' issues, but NOT always. And people need to keep their traps shut. Unless they have BTDT and can offer productive help.