Unsoliticed medical advice, it cant be that bad! Lupus is a disease that most people have heard of but usually do not know much about, yet it is an illness that people always seem to have the answer for or advice about. Strangely, it seems that those who do not suffer from SLE, love to tell us sickies just what will makes us better, offering unwanted, unneeded, sometimes rude, often unfounded, strange, and potentially harmful antidotes, and or opinions. This helpful medical advice can leave us lupies feeling frustrated, hurt, unheard and of course annoyed. Obviously we cannot control how someone perceives our illness, or the act of those giving us advice to stop, and think, and maybe, just maybe receive some knowledge from a reputable source before giving said advice. There are also those lovely I know someone who knows someone who has lupus and they are fine or they are in remission. I think this is one of the worst things that people say to me when said in an uncaring, condescending, minimizing my suffering, way. When this is said like they even know what that person has gone through, when it really seems that they do not care. I have explained many times about true remissions and that they only happen in 6% of lupus patients, so what some people think are remissions are actually drug induced, reductions of symptoms, meaning that person you are talking about is taking many medications, resting frequently, exercising and doing their best to function normally. Also everyone with lupus is different, we are known as snowflakes because we are each different in the way that lupus affects us. lupus.org/webmodules/webarticlesnet/templates/new_magazineempty.aspx?articleid=2756&zoneid=225 Q: Does lupus always eventually go into remission? A: The simple answer is no. The more complex answer is that, for the majority of patients, the disease is characterized by periods of flares (i.e., active disease) and periods where things are relatively quiescent (i.e., inactive disease). In the latter situation, quiescence is usually achieved with medication. Remission may be harder to define. One definition is that there are no symptoms, the patient is taking no medications, and all tests -- including the antinuclear antibodies -- become normal. In my study published 20 years ago, fewer than 6 percent of patients achieved that goal. Therefore I prefer to say that lupus may often become quiescent, but some medication may be required to keep it that way. -- Peter Schur, M.D. It is also not so pleasant to hear that someone close to you has died of lupus and make our disease seem hopeless, but this I take much better than minimizing or not caring. This reaction to me makes it seem like that person is concerned. I get a chuckle when people think maybe if I slept more, or did a special diet, or did acupuncture, massage, or go to a chiropractor and my symptoms would just disappear. I have no clue why people think that I have not looked into, done, asked or tried many things to help me feel better. Of course, I have tried a number of things, you are not so clever as to mention anything I have not heard before, nor have you found the answer I have been looking for. I also HATE when people think they have suffered more than me when having an illness that is not chronic, like a flu, honey I feel like I have the flu every day! I dont mind when people give me unsolicited medical or life advice as long as they are not being rude, or condescending, if they are well meaning and kind, I take their remarks as concern not as minimizing how I feel. It is very nice to be told you look good, or pretty, or well, but just because I can slap a pound of make up on my face or body to cover rashes and lesions, wear my suck it all in jeans or dress, and smile, does not mean I feel like I look. My hurting is inside except for when I have a rash that cannot be covered with make up or clothes. For some reason people think there is a distinct look someone has when ill, like we should look like death is at our door step. People also think that attractive people cannot be ill, like beauty cannot have a serious illness. It is very strange, some of the reactions I have gotten for being an attractive woman, especially from fellow women. I have literally gotten gasps from people like how could I possibly be suffering while having eye shadow on and a smile on my face. I like to ask people when they tell me that I do not look sick, What does sick look like? Most people cannot explain what they mean or maybe they are not prepared for my direct question made in response to their direct accusation. I am not exaggerating my illness or how sick I am or feel, people close to me have seen me unable to walk, with the rashes on my body, the dark, puffiness under my eyes, my weight drop and gain, my hours spent in the bathroom vomiting, my thermometer reading of 102, my inability to eat, go out or talk. They know I am not exaggerating my symptoms but down playing them. I would not wish this illness on anyone, I would say my worst enemy but I dont have any, fortunately. I suffer chronically, this means daily and pretty much, forever. I have the flu everyday, and simple tasks for a healthy person can seem insurmountable to me and others with SLE. I do not like to complain so please do not tell me you know someone with a bad illness that never complains, maybe they just do not complain to you, or maybe they are doing well on days you see or talk to them. I cannot help that I feel awful most days even with the medications that keep me semi functional sometimes. I am not trying to burden you or make you sad, angry, or worry, I am just trying to deal with my illness, minute by minute, in the hopes that some day there will be a cure and or a vaccine, so that one day, no one else will ever have to suffer like I do. I know that there are people with lupus sicker than me, and people with other diseases that are quickly fatal, but that does not negate my suffering or make my suffering any less. I am obsessed with my illness because it never lets me forget it is there, I am sick every single day and my best day would be your worst. Dont judge me for having lupus, embrace me because I am surviving. mrslupus.blogspot/2011/12/unsoliticed-medical-advice-it-cant-be.html
Posted on: Wed, 24 Dec 2014 14:17:18 +0000
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